Thursday, June 27, 2013

Lack of understanding around chronic health conditions can be dangerous

Especially in the wrong hands.

I've dealt with unhelpful advice - which isn't dangerous, but more 'tedius' than hurtful.

I've dealt with massive medical debt, again, not dangerous.... but over $50,000 in debt obtained during the first three years of my illness meant that I did NOT immediately seek medical care for years afterwards. I just couldn't afford it. Risky, yes. But I was already on the verge of bankruptcy and backpedaling as fast as I could.

I've dealt with family and friends trying to shame me about the situation I was in. Again, not dangerous - but ultimately very painful emotionally. They criticized my housekeeping. Good lord, I was just fighting to survive. If you don't think it's clean enough (it wasn't) then why not just help. Admittedly, some of them DID help. Still others helped, then didn't understand why it would get messy again... well, it's not like I was getting any better (at least not then)... so, of course, my energies were tied up with simply trying to feed and clothe my family... that's as far as I got for many, many years. Note: I broke off contact with everyone that continued to try to shame me into action after multiple attempt to explain my health condition prevented me from doing what they thought I should be able to do.

But, I've never even imagined that someone could do to Karina  in Denmark, what they are doing to her.

They removed her from her family who was providing for her, taking good care of her and helping her out (more than most of my family ever did) and institutionalized her and are FORCING her to undergo experimental treatment for ME/CFS (chronic fatigue syndrome for those in the US).  The treatment they are forcing her to undertake has had a paper published after attempting treatment on mildly ill patients that has been proven to have several unsubstantiated claims (i.e., they 'claim' that x percent improved after treatment - but to be classified as improved, their scores averaged LOWER than the scores that were required to be admitted to the test).  This treatment has NEVER been tested on someone as ill as Karina.

The treatment requires physical activity EVEN THOUGH there is documented evidence of the fact that one of the critical diagnostic tools for ME/CFS is PEM (post-exertional malaise). What is that, you ask? It's where physical or mental activity makes you WORSE. In fact, time and again, folks that develop this condition and are in the worst shape? Are the ones that tried to push through the fatigue and continue to be active even though their body was signalling fatigue - to slow down and rest.

Her parents are forbidden from visiting her UNLESS they agree to support the forced treatment that Karina is receiving. The nurses have reported that Karina is down to primarily one word answers to most questions - Yes and No.... except for ONE sentence that she has managed to gain the strength enough to express - repeating it as they force her through the activities "YOU ARE KILLING ME".

Since when does a person have to go through experimental medical treatment without a choice? She was removed from her family where she was LESS ILL and forced into this situation. She's being forced through the treatment. Even after trying to convince them to stop, they continue. Her civil liberties are not to be taken away simply because people don't understand her medical condition. She should have the right to chose where she lives (as long as it's healthy and there is someone there to take care of her) and what kind of medical treatment she chooses for herself. It's an atrocity.

Please, learn about this, spread the news... and help raise awareness of the situation. There's a group on facebook fighting for justice for Karina....

There's a letter writing campaign:

And there are petitions.

Please help!

Tuesday, June 25, 2013

Going gluten free

General advice for folks with MTHFR is that you should avoid gluten and dairy.

I've been lactose intolerant my whole life. I still remember cutting deals with a little boy in elementary school, he got my full milk carton if I got his empty one - so that I wouldn't get into trouble for not drinking my milk.

But, I wasn't so certain I needed to cut out gluten. I didn't eat a ton of gluten to start with. I had a few regular dishes with pasta in them, a few mexican dishes with flour tortilla's... but I didn't eat much bread. Funny enough, I didn't connect the worsening of my symptoms to an addiction to eating Special K breakfast bars every morning and for snacks... but, when you first think gluten-free, without doing the research to find out what that means, it's funny what the mind skips over as possible issues.

And, I certainly never noticed any immediate, obvious reaction to ingesting gluten, like I did with dairy.

Several months ago, I started to cut-back on my gluten intake. I tried going gluten free, I did... but it was HARD and I wasn't doing very well.

Then I switched to the new, new doctor - and he said, just try to cut out the majority of gluten for now. And that seemed to take the pressure off.  Add dental issues, and suddenly, going gluten free got a lot easier. I've been gluten free for over six weeks now. The same six weeks post-MTHFR treatment and I'm feeling pretty good. Pain is dramatically reduced. Nueral isuses are gone. Fatigue is the normal, everyday life kind of fatigue and being slightly out of shape.

I snuck a dinner roll two nights ago. Within two hours my joints started to flare up. Two hours. It's still not bad, but it's still not back to where it was before I snuck the roll.

So, yep. I've confirmed it's not just the treatment I'm undergoing.... it's also the gluten-free diet I've adopted.

Hopefully within a couple of weeks, I'll be back to eating regular food and hopefully by then, the gluten-cravings will be still subsided a lot and make it easier for me to start adding more dishes to my diet that are still naturally gluten free. Eventually, I'll start looking at gluten-alternatives. Last time I experimented I had an allergic reaction... but since I'd tried a half-dozen new products, I don't know which ingrediant I reacted to. So, I'll have to focus on trying one new thing a week and suss out what I'm allergic to.

Friday, June 21, 2013

Things just keep getting better - healthwise

All my nuerologic symptoms are completely gone. No more dizzy spells. No more numbness and tingling on my right side. Just gone.

All my gut issues are better. From having diahhrea 9 days out of 10, I'm down to one episode in the last month... and I wouldn't be surprised if dairy hadn't snuck into a meal at the time. I'm still dairy free and gluten free (and have been fully free for a solid month). I did sneak in a roll last night, with no ill effects. So, I'm going to stick to gluten free for three solid months (starting over again now) and if I can eat it again in three months with no issues, it's coming back into my diet.

The metalic taste in my mouth is gone. Thankfully due to teeth extractions, who knew that I was just testing all the old fillings? Considering I couldn't notice the taste when I wasn't eating or drinking - just when I was drinking water. Sadly, I'm still having some dental issues (and hating my dentist, sigh). But give me a few more weeks and hopefully, the worst will be over when I get the next set of dentures.

Pain issues, are still hanging on. But very mild. The pain wasn't my biggest complaint as it was. And it's improved. I'm down to a mild cramp-like muscle-like pain in my left calf -- there has been pain here since my Pulmonary Embolism. And while the doctors swear I never had a DVT in either leg, the truth is, I had to have a DVT somewhere... and the chronic pain in this limb is very similar to post-thrombotic syndrome -like pain. Just no swelling nor redness (which is good). The same leg also has recurrent pain in my knee. This is the knee I had to have ALC reconstruction in... and it's never been quite 'right' ever since the surgery. It doesn't hurt all the time... and more often than not, it's tied to barometric pain and seems to be 'joint pain'.   My new doctor is recommending that I check out Healthlight. And get a model close to $500 that I can apply to my knee and calf and see if it will work. He'd also recommend PEMF - if it was affordable (it's not)... so we'll have to see if Healthlight helps. Only, we'll probably be waiting a bit until I can swing the cost.

Additionally, I have some mid-back, upper-back pain that's started to come back. Chiropractic care has been 'managing' it... but it got REALLY bad right before my gall bladder surgery... and stopped for several months after (go figure, it must have been referred pain from that). But it's back now... albeit, much reduced pain than I've had before. My new doctor is recommending accupuncture for referred pain.... I found a groupon coupon for $25 for an initial visit... which I can afford... and since I didn't have any referrals for anyone locally - it seems like worth a try.

I also found a groupon for $20 worth of 30 visits worth of Yoga classes. Since I've been debating what and where I can afford to start going... this seems like something worth trying.  The only key is that you can only do ten sessions maximum at each location - but there are a half-dozen locations I can use this for... so I can try out a few studios. I will probably use this throughout this summer and decide on a gym to join in the fall if I'm still feeling amazing.

Lastly -the fatigue. OMG!!!! I'm still a little more tired than I'd like. But NOTHING. I repeat NOTHING like before. While moderating my activity levels, I've slowly started to expand what I try to do. I'm already up to a good, solid full hour of heavy-duty housework during working days!!!! And I could manage a good multi-hour working session on the weekends. If I get over-tired, I stop and rest and I'm recovering within a day or two. I took a trip to NYC and even though I was ultra-cautious about time / energy management, I still overdid it a little bit. But within five days, I felt like I was back on track to healing.

I cannot possibly imagine life without MTHFR treatment ever again. Seriously! This is AMAZING!

Monday, June 03, 2013

MTHFR - Continuted Progress

I've added Vitamin C (cheap brand, could probably invest in better) and ALA.

I've added back in 90% of the supplements I was taking a month ago (right now skipping the fish oil and the probiotic that has to be refrigerated.

Still on a liquid diet (thanks dentist.. sigh... five weeks total MINIMUM on a liquid diet kind of sucks).

But, I've gotten to the point where I can tolerate the pills and I'm doing REALLY WELL Health-wise.

After four weeks, I've only noticed a minor issue in mood. My pain is really low, my fatigue is barely noticeable (and seems more like a just-out-of-shape fatigue vs. sick-fatigue). I'm able to exert myself without having more pain and fatigue in the following days.

I've got some travel plans coming up - worst thing is trying to figure out what I'll be able to eat. It's hard enough being gluten-free and dairy-free... but add the liquid requirement and suddenly it's going to be impossible to eat at a restaurant. But, I'll figure it out.

On the work front, I feel much more able to figure things out and focus (which cuts stress).

On the home front, I'm taking care of chores that have been on my list of things to do for over a year. Very cool!