Frustrated with new doctor - thinking about switching again

My new doctor didn't know anything about MTHFR. But, she says she's willing to learn. She then went out and learned 10-year old information. When she recommended that I start taking folic acid and cyanocobalamin... I refused. I told her she HAD to find an alternative that contains L5methyl Folate and methylcobalamin or I wasn't going to take it. We had a bit of a discussion. But she did find a source that provided those two vitamins in a form that I could take.

But, I got away feeling that she thought I was just being difficult. I tried to explain to her the most recent research and provide links AGAIN to her about the most recent treatments and studies around how MTHFR affects individuals.

She realizes that the MTHFR is an obstacle to my getting healthy. But I"m under the impression that she's not seeing that there's a treatment for it. I know for a fact, that she prefers treatment that has proven studies. The problem is that MTHFR is so individualized and requires individualized treatment that it will never be a good candidate for studies to prove that xyz treatment is affective for it. Besides, treatment plans for it are so brand new that they are very much in the realm of experimental. It's 100% supplements,  but supplements designed to support the process that isn't getting supported properly due to the genetic issues.

So, the first month on her treatment plan and I had a few things come up. 1) I took a terrible fall and hurt my ankle, wrists, etc. 2) I had a bad reaction to the magnesium she had me take even though I told her that I had trouble taking it - I took it anyway, but stopped immediately... she was irritated that I didn't tell her immediately I had an issue with it - which wasn't true. I told her before we ordered it that I might not be able to tolerate it. She had me order it 3 weeks before I was due to start it (so it could save shipping costs). And I told her within 8 hours that the symptoms had started. And she's irritated with me? Because, why? 3) I started to have dizzy spells. Dizzy spells have come and gone through my health issues. They are unlikely the result of my new supplements, it's just a sign of my worsening condition. I expected it. It was just a matter of time since I knew I was already on a down-hill slide before we started treatment. 4) I had an allergic reaction to one of the gluten-free alternatives thanks to trying to go gluten free. It happens.

So, now, I get the distinct impression that she was unhappy that I was about the same after one month worth of treatment. I wasn't unhappy with the progress. It's my impression that I've been sick for years. One month of basic treatment of my symptoms isn't going to change the world. I believe that my underlying cause for all of my symptoms comes back to untreated MTHFR. My goal was to use her to help me heal my gut, which is a good preliminary step before addressing MTHFR. She's on the other hand, saying things like - well. Let's hold back. Seriously?

Grrrrr

One of my concerns with working with her is that she's still not quite on board with trying to understand MTHFR.  So a couple of weeks ago, I was thinking that I would stick with her for a few months until I could work out an opportunity to travel 1000 miles or so to the nearest MTHFR specialist. I went looking for recommendations. And lo and behold. I found one in Colorado who comes highly recommended.

I give him a call thinking I might verify that this would be something where we could possibly have a first appointment in person and then perhaps follow up appointments via skype. Heck, he's willing to do almost 100% of it via Skype. And in fact, had an opening this week if I wanted to get started.

He 'GETS' MTHFR. He's been treating people with chronic pain, chronic fatigue and having great results with his treatments. He also knows a lot about Thyroid - more than either my doctor, or my son's pediatrition. My thyroid counts are frequently 'off' but then dismissed as not being significant by my doctor. With little to know explanation about what they actually tested or what ranges they were tested against. And my understanding is that some people with thyroid issues have gotten help when the regular doctors were dismissing their issues. My 9 yr old son recently had a thyroid test because he was feeling 'off' and 'unwell'. It came back high - and the doctor, again, dismissed it. Saying that high thyroid wouldn't account for his symptoms (which sounds like bs to me). Again, no information about what exactly got tested,k let alone, what ranges it was tested against. No explanation why it might be high or what that might do for him.

So, I think I'm going to switch from the Naturalpathic doctor who is irritating me and switch to this MD who is a specialist in integrative health. I'm thinking this fall that we will probably head out to Colorado to do an in-person consult. In preparation, I think it's time to break down and order the genetic testing for the boys to see just how much of the gunky MTHFR they managed to inherit and get them some treatment.

At this point, I'm thinking that once I've got my finances back under control that we're going to proceed pretty strongly down this new path. I do need to regroup a bit first, thanks to the outrageous costs of dental work - sigh. But, it won't keep me down for long.

Best laid plans get trampled again

So, I thought I had it ALL figured out. Major dental work - huge bill - but not urgent. I could put away $2500 in 2013 pre-tax using FSA dollars. I could put away $2500 in 2014 pre-tax using FSA dollars. And I could put away several thousand pre-tax dollars with my HSA plan.

In January of 2014, I could still access 100% of my 2013 FSA, and 100% of 2014 FSA and as much HSA funds as I needed to for the balance and leave the remaining funds for other, future health care.

Yeah. All planned out.

Until last month - when four of my molars started to bother me. Bother me a lot. Like hide the plyers from me because I might not wait for an oral surgeon to get the blasted things out.

So, I procrastinated. I put ice on it. I bought more maximum strength Ambusol. I started taking Ibuprofen like it was candy.

After three weeks of misery, I broke down and went to the dentist. I still had $2500 in my 2013 FSA. And I had another $500 in my HSA. And I had $1500 between emergency savings and checking account. Well, I had that much. I don't anymore. It still wasn't enough. BUT I managed to get another $2000 through a credit agency. 0% interest for 12 months (you can bet it will be payed off long before then).

Ok - it's settled. I paid the dentist. THEN I got told it would take two weeks to get an appointment with the oral surgeon. Seriously? OMG I AM IN AGONY. TWO WEEKS? GAH. Ok. I think I can survive that long. I've survived this long on ibuprofen, ambusol and ice. What's two more weeks?

ONLY then I got a call back that they didn't think they could fit me in within two weeks - it would be six weeks. Oh HELL no. That was NOT going to fly.  Oh, and by the way, we'll have to do some additional work - and it'll be another $800. sigh.

So, I went back in and had a discussion. I mentioned the pain level. I mentioned my concern about waiting six weeks. Before I got to the point of asking for a FULL refund and finding another dentist, they got on the phone with the oral surgeon on my behalf and threatened him with taking my surgery to someone else. Suddenly there was an opening in two weeks. TAKE IT.

For the $800 I don't have? They are willing to let me bring it in after payday the day of the surgery. That'll do. That'll do.

Now, if I could just hide under the covers and act like these next two weeks aren't happening to me, that would help. The surgery is going to be pretty bad and recovery is rough. But it won't be nearly the kind of pain I'm dealing with right now... I'll be really glad when it's over and done with and I'm starting to heal.

A tatste of my own medicine?

Sigh.

I'm struggling with a chronic illness that hasn't been diagnosed after I've been ill for almost eight full years.  And no sign of that changing anytime soon.

I'm struggling as it is with getting treatment of any sort, let alone anything affective.

And I'm struggling with family members who don't take my health issues seriously or feel that I'm just becoming lazy.

And I HATE it.

And I think I've done it to my 9 yr old son.... sigh.

He's been 'not feeling right' for two months now.  He is complaining of the same kinds of symptoms to some degree that I have. I intentionally avoid dwelling on my health issues with him, but you can't hide the fact that you are basically bedridden outside of working hours from your immediately family members.

He knows about my health issues because he's very astute and I notice that if I'm talking with someone else within earshot - he absorbs everything.

At first, I thought he was just trying to get out of going to school - it wouldn't have been the first time he 'didn't feel well' because he wanted to avoid it.

Then I thought maybe he was seeking attention.

Then I thought he was just exagerating.

But, nine year old boys don't lay down in bed the minute they get home from school for any reason other than - they really don't feel well.

I am so scared that he's going to have something so similar to what I have and have to go through all of the misery I've gone through on my road to try to get to treatment.  In fact, I wanted it so badly, I've been trying to avoid admitting that it's possible that he really is sick.

At least I have new insight into some of the people in my family who like to downgrade my own health issues.

So, next step. It could be something really simple and related to a dozen easily treated conditions. I'm getting him to the doctor. I'm going to hope for the best that it's something easily diagnosed, treated and cured. And if not? Well, he'll still have a mother by his side who will do anything in her power to help him. He won't have to face this on his own.  I just hope that it doesn't have to come to this.

Croudsourcing funding for Medical research

So much medical research gets put on the backburner due to funding.

The drug companies have to balance what they spend against how much they can earn and even promising drugs sometimes get put on the slow-track.

That's what's happened with a drug that's seems to have a lot of promise for treatment of Chronic Fatigue.

Please consider donating. There are literally millions of Americans diagnosed with chronic pain and/or fatigue and millions more who are undiagnosed that might be able to be helped to return to a productive, active, healthy lifestyle (and off of disability) if this medicine works as well as so many hope it will.

Donate to MeAndYou to help

My dog ate my homework

Man oh man.... my dog ate my homework. Well, actually it was a form for my doctor that I needed to sign and mail back... but she ate it. She tore open the envelope and shredded the envelope and letter.

See.... the sad thing is I now know how to make sure she eats anything I want her to destroy in the future.... I had spilled a tiny amount of cherry koolaid (well, watered down kool aid) - on the envelope. She was SO INTO that smell that there was no way that she wasn't going to go for it.

So, I guess that's it... let me know if you need any homework eaten, my dog just needs a little bit of sugared up spill and she'll tear-to.

MTHFR - week 3

OK...

I thought I was going to come in here often and post progress.

Yeah. Oh well.

It's been a couple of weeks. And not a lot of huge changes. Tons of new supplements added. I've broken down and ordered some small rectangular tupperware-type containers that I can label with a sharpie and have a Breakfast dose, a mid-morning dose, a lunch dose, a mid-afternoon dose, a supper dose, and an evening does for my meds/supplements.

Symptoms?

Well, not a lot of change, just yet. I did spend 7 days without diahrrea. But, I had a period in December that lasted just as long without all these supplements. And it's been way worse ever since the break. Hopefully it'll get better again.

We'll see...

HyVee's new Fuel Saver program

NOTE: I am not receiving any compensation for this review.

I've been checking out other loyalty programs in the area... and I shop regularly at HyVee. So, when they created their new customer loyalty program - I signed up pretty quickly.

Here's how they set it up:

1) Each week they select key items in the store to promote. If you purchase x product this week, you will earn y number of cents off of the price per gallon for gas. The more you buy, the pennies off of gas accumulate.
2) Swipe your card during check out to claim the money.
3) Swipe your card when pumping gas at a HyVee station, Caseys Convenience Stores or select Shell stations - and the cost per gallon for the fill will drop according to how much you have for your current balance.

So, let's say you buy everything on their list this week... that could be $2.00 a gallon off!  Fill your car with 10 gallons, and you just saved $20.00. Sounds good, right?

Well.... it depends.  If you spent $30.00 on ten items that you wouldn't normally buy and don't want? Not such a great deal.

AND... since you're there already - what if you usually shop at Fareway or Aldis (the local low-cost grocery stores)... and you spend another $20.00 more for that weeks groceries than you would have spent if you had stayed with the lower cost grocery stores.

For me though, it's a program I'm definitely participating in. Here's the why.

I don't tend to shop at the lower-cost options because I can't get everything I want at them. When I was younger, more energetic - I would go ahead and shop there anyway for the savings. Then I would make a second trip to the stores that DID carry everything I needed to get what the other stores didn't carry.

The problem is that I don't have that kind of energy any more. It's hard enough to make one trip to a grocery store and I'll pay the premium price to get the convenience of finding everything I need.

But, taking that in hand... it would be silly not to take advantage of a loyalty program if I'm paying the premium prices. EXCEPT... I then turn around and pay absolutely zero attention to which programs qualify for the program. I buy whatever I'm going to buy and don't include those tags into the factors. I buy the brands I want when brand names matter, the quality I want when quality matters and the most frugal option I want when nothing else matters.

I swipe my card every time I check out, since I'm not paying attention. AND I swipe the card at the gas station every time I fill completely up.... and I almost always save 3 or 5 cents a gallon. Not a huge discount, I know... but it's a savings I wouldn't have otherwise. It's definitely not (IMHO) a reason to start shopping at HyVee over a more frugal option. If, however, you are shopping at a more expensive option - Dahls, Whole Foods, and Trader Joes come to mind... you might want to consider it. I know Dahls is running a similar program (don't really know how well it compares) - but HyVee has a great selection, they are running around the middle-tier for pricing, they have great organic and Health Food options.

So, like a lot of the other customer loyalty programs I've reviewed... I'm pretty solid with using the program, but not necessarily changing the way I shop to take more advantage of the program as the payoff isn't worth increasing expenses to get the payoff.

MTHFR progress - (half week)

I'm going to try to post progress/issues/concerns/benefits once a week - and weekends will work easier than during the week. So, guess I'll start today.

My supplements arrived this week. Several boxes, one quite large box.

On day one, I started with SP Complete Dairy Free and Zypan.  Both are from Standard Process.

The SP Complete is two scoops of powder mixed into a shake. I also need to add more Greek Yogurt to my diet and I don't really do 'regular' yogurt due to all those years of not realizing what it was about dairy that bothered me. I tried mixing it into some yogurt and fruit smoothie... it was pretty gross. I drank it, but it didn't go with fruit at all. So then, I had a gallon of Lactaid Milk and a gallon of Almond Milk to try it in. I haven't tried the Almond milk yet, so I tried it with the Lactaid first. Still not my favorite taste, so I added some chocolate syrup (might get me into trouble, but I could drink it down fairly easily). Diarrhea as a result because lactaid has stopped working for me to make it easier to tolerate dairy... understandably. So, I tried the Almond Milk last night. Other than the fact that it didn't blend up very well, it was much better tasting than the Lactaid Milk. I haven't drank it without supplements, but Almond Milk was definitely a win for drinking the supplement shake.

The Zypan is a digestion aid. I'm taking 1 to 3 tablets with every meal. More for larger protein servings, less for smaller meals and/or meat-less meals. The pill smell really bad, but aren't hard to take.

So, far, so good.

On Day two, the HMF Replete arrived  a probiotic from *** and I started it. I'm keeping the packets in the Refrigerator... and you need to mix it in with water to drink it down. Funny enough, it doesn't have much of a taste, clouds the water, but ... eh... not that bad. Anyway, I can actually drink the water with the HMF Replete without completely gagging. How sad is it that I can't drink clear, untainted water without gagging. But cloudy, supplement filled water? Yeah, I can drink the whole glass. WEIRD.

After the second dose of HMF Replete, my intestines feel like things are going on. No severe discomfort, but something's up... which is to be expected.

I'm still adapting to the Mediteranean diet. I need to work harder on getting breakfast options and better options for work. I'm switching to a new team in a new office in a week... and will be losing the cafeteria. I've been doing much better at taking my lunches to work and plan on continuing that in the new job. But now I need to focus on bringing lunch and dinner. AND making them Mediteranean diet specific meals.  I'm cruising food blogs and digging through some recipe sites online. By the time you have to do Mediteranean sans-Dairy and sans-Gluten, it takes a bit of digging to figure things out.

Most of the meals that haven't been diet-specific have been tied to convenience. I need to be able to grab food that is quick and easy to eat. So far, most of the dishes I've really enjoyed have been all super-quick and easy (so that's a blessing). And I've adapted my Poor Boy that I make once or twice a week to being Mediteranean Diet Friendly.  Still yummy and better for me? That's a win.

Still taking the epsom salt baths three times a week. Still going to the chiropractor once a week. Those two activities bring the chronic pain to a manageable level. It's the Fatigue and the constant diarrhea that tear me down and make it so hard to focus and concentrate at work and home.

I'm irritable and easily distracted... all I can hope is that this gets better in the long run.