The best suggestion I ever got

June 2, 2012

“Have you tried magnetic therapy?”  “My friend had luck with acupuncture.”  “I perform reiki and it could help you.”  “My sister’s boyfriend’s cousin’s roommate’s father’s boss has the best doctor.”

Ok, the last one I made up, but let’s face it, we’ve all heard something like that, right?  Friends, family, acquaintances, coworkers, and absolute strangers have all felt the need to give me advice on how to “fix” my health problems.  Everyone has an idea and they feel the strong need to share it.  I guess it hasn’t occurred to them that after 20 years, I’ve heard it all.  It also doesn’t occur to them that what they’re suggesting might be completely ridiculous.

Tonight I was at a gathering with people I didn’t know.  We had just met for the first time, but in talking about jobs, I mentioned that I wasn’t working due to health stuff.  Later, when I was speaking one-on-one with someone, I referred again to my health problems.  He asked if I’d heard of PatientsLikeMe.  This was awesome!  Let me explain….

First, PatientsLikeMe is actually useful.  If I hadn’t heard of it I might have blown off the suggestion only because I get so many.  But I knew of this site already so I knew how great they are.  Second, he made it clear that he personally knew about this site, and he wasn’t suggesting it just because he “heard” it was good.  Third, he was suggesting a way to find community.  He was not suggesting a treatment.  And finally, he was clearly trying to offer something that he honestly felt was useful because he cared.  I think that many people do want to help, but many more want to feel useful and knowledgeable and giving advice accomplishes this.  This guy wasn’t looking to feel good about himself by helping; he just wanted to help.

So for all of these reasons, this guy rocks.  I told him how awesome that was, and explained the kind of “advice” I usually get and he was appalled.  I just hope he can teach others how to be more helpful by not trying so hard to help.

Now I just need to come up with a good way to repel intrusive strangers……

Leave a Comment » | Educating, Kindness, Raves, Thoughtfulness | Permalink
Posted by chronicrants

All signs point to starting over

May 29, 2012

***Check out the Patients for a Moment blog carnival hosted by Chronic Babe***

Sometimes all signs point the same way.  This seems to be one of those times, so I better pay attention.

The symptoms started when I was 12.  I got the IBS diagnosis at 22 and the PCOS diagnosis at 25.  The “big one” was in between at 23: undifferentiated connective tissue disease.  This doesn’t mean a whole lot, but vague as it is, it’s more than I had before.  Hypothyroid came around age 26 and Hashimoto’s was around age 31.  There were others in there too, but they were smaller.  Then again, I thought most of these were pretty small, too.  After all, hypothyroid didn’t mean anything more than taking a pill every morning.  And according to my doctor, Hashimoto’s had the same treatment as hypothyroid.  PCOS also didn’t mean much until I was ready to have kids, which hasn’t happened yet.  And IBS is a nice name and all, but the only treatment is diet, and I was really left on my own to figure that out, aside from the somewhat-useful-in-a-very-limited-way pamphlet I got from the doctor.  No, the big one was definitely the connective tissue diagnosis.

I had symptoms for 11 years before I got any sort of autoimmune diagnosis, so I’d had plenty of time to come to terms with my symptoms and their permanence in my life.  I had a good handle on things.  So why did my world turn upside down again with that diagnosis?  Suddenly I was going through the 5 stages of grief all over again.  It was like I had to start over.

Last year my symptoms got much worse than they had been before and I finally had to leave my job.  That short absence has turned into a permanent one (at least from that job) and that pushed me to start researching my illnesses all over again.  I want to get back to work at some point.  I want to date.  I want to actually live my life!  So I found web sites and books and online groups.  I discovered some new things I hadn’t known about, and suddenly I was starting over with everything.

For the last month my mind has been whirling with the possibilities.  It has been overwhelming and frustrating, but it’s also provided some hope for the first time in many years.  I may be worse now than I was before, but it seems possible that I could improve, and feel better than I ever have in my adult life.  I’m scared to think that way, but it seems possible.

Every week WEGO Health hosts a tweetchat for health activists (Tuesdays 3pm EST, #HAChat – please join!)  Among other things, today we discussed the effects of having a diagnosis.  That really got me thinking about how I feel like I have a new diagnosis now.  In truth I have the same diagnoses as before, but I’ve just realized that Hashimoto’s and hypothyroid should be treated differently and that my PCOS and IBS could be treated differently too!  It’s as if I was just diagnosed.  I’m considering treatments that I’d never heard of until a few months ago.

As my wheels were still turning this afternoon, I found out about the Patients for a Moment blog carnival being hosted by ChronicBabe this week.  The topic?  “Starting fresh.”  Perfect, right?  Here’s what they want:

Is there something you’re doing that’s new, or different from how you’ve done it before? Are you starting something over that you previously didn’t succeed at doing? Are you giving a new doctor, medication, lifestyle behavior or workout regimen a shot? Fill us in on your experience!

Like I said, all the signs were pointing the same way.  So I gave in.  I took the time to really think about how strange it is to be going through all of this, especially so many years after what I had thought was my “definitive” diagnosis.  This just goes to prove that the learning never ends.  I am reading constantly, following blogs and tweetchats, trying my best to figure out which is the best approach to take.  I am talking to alternative practitioners to learn about their different approaches.  [I’ve been amazed at how willing they are to spend 1/2 hour on the phone telling me about what they do – the traditional doctors I contact don’t do this.]  I am on a gluten-free diet and looking into more dietary changes.  I am researching supplements and different medications.  I am adjusting my expectations.  I am asking for ideas from friends and family.  For the first time in many years, I can be proactive again.  In short, I am acting like a newly-diagnosed patient almost a decade after my first diagnosis and two decades after the onset of symptoms, and I love it. 

4 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

A little support goes a very long way

May 21, 2012

I have two kickass (if I do say so myself) blog posts in the works, but I’m going to hold off on those for now and instead ask you to take a look at yesterday’s post if you haven’t yet.  And if you’ve already read it, please write a comment.  I know that everyone can relate in one way or another – I’m guessing most of us have had trouble finding a doctor or other practitioner, or going against the “standard medical advice,” at some point.

I’ve gotten so many great comments in my email, through Twitter, and on this blog, and it’s helping so much.  Some people are offering practical advice for my specific situation and others are offering general support, and they are equally welcome.  So please take a look.  I’ll pick up with other topics again soon, so stay tuned.  Trust me, they really are kickass.

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Kindness, Limitations, Medication, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Tearing my hair out, aka No idea which treatment to try

May 20, 2012

Today I wrote this email to some of my friends and family because I feel confused, overwhelmed, and stuck.  As I was near the end, it occurred to me that you might have some useful advice.  So for anyone out there who has had to deal with difficult treatment decisions and/or has thyroid problems, please offer your advice.  Please write a comment, sent a tweet, or shoot off an email.  I would love any and all advice that you want to give!

This is the exact email I wrote.  The only change I made is my name at the bottom.  Please tell me what you think.  What would your next step be if you were in my position?

~~~~~~~~~~~~~~

If you’re getting this email, it’s because I think you’re smart and I value your opinion.  You might not have an opinion to this, and that’s ok.  There’s definitely no one right answer.

Basically, I’m stuck with the health stuff.  I definitely need to try something new, and I can’t decide how to proceed.  Every time I make up my mind, I change it.  If you feel like reading this, set aside a few minutes.  I’ll lay it all out.  If not, that’s fine.  I definitely won’t hold it against you!
For the last three months I’ve been on a gluten-free diet.  This has definitely helped.  It has definitely not helped enough.  My guess is that being gluten-free is part of the solution.  I need to figure out the rest now.
I am making the assumption that I need to treat my thyroid.  This could be wrong, but out of everything, this is the part I’m most confident about and I feel good about proceeding this way.  Also, I don’t have any other ideas.  But no, really, this does make sense.  Hypothyroid and raised thyroid antibodies (which are related but not the same, and I have both) can cause fatigue (hello!).  There is a link between these and PCOS, IBS, acid reflux (which I may or may not have), and joint pain.  Then I’ve been reading about other random symptoms that I can relate to but that I’m not focusing on.  A good example is a “normal” body temp below 98 degrees.  I have this, and I never thought much of it, other than adjusting my math when calculating a “fever.”  Maybe it’s related to the hypothyroid or maybe not, but I’m not going to worry about it.  However, there’s a good chance there’s a link with the fatigue and GI problems, and a smaller chance with the joint pain.  By the way, hypothyroid means my thyroid is underactive.  Really, you don’t need to know anything about it for this.
For 8 years I have been on the most common drug to treat hypothyroid.  At first it seemed to work in terms of my energy level and blood tests.  Now my blood tests still look good, but I have been finding more and more people talking about having normal blood tests while still have hypothyroid symptoms.  There is no treatment for the raised thyroid antibodies other than surgically removing the thyroid and I am definitely not considering that.
Options for treating hypothyroid and raised thyroid antibodies:
— Try another drug of the type I’m on.  This treats the T4 hormone.  There are other drugs and maybe one of those will work.  This is the approach that almost every doctor will suggest.
— Try a drug to treat the T3 hormone.  There aren’t as many doctors who will do this, but they can be found.  I found one in Newton.
— Try a combination of T3 treatment with supplements or dietary changes.
— Try supplements and dietary changes – no drugs.
— Try dietary changes alone.
The easiest answer is to try the drugs, but the more I read, the less likely it seems that these will work.  Trying the drugs would give me a faster answer than diet, but I could be dealing with nasty side effects.  I think it makes sense to try dietary changes.  That’s why I did the gluten-free diet: I read a lot about gluten triggering thyroid antibodies.  Celiac is when gluten triggers intestinal antibodies, so this makes sense.  The fact that the diet has helped a little makes me think that I’m on the right track.  And the idea of not having daily nausea…. what a dream!  So even if the dietary changes don’t fix everything, they should at least fix the GI problems and that would make this all worthwhile.
Ok, so that’s why I want to pursue the “unconventional” approach of changing my diet to fix my thyroid instead of taking more pills.  And because it’s unconventional, I can’t simply ask my PCP, etc. for advice.
If you think this isn’t the right approach please speak up, but give me a reason why you think it’s wrong.
So assuming that I should make dietary changes, the problem is that I haven’t found any agreement on how to go forward.  Some people say to take all of the trigger foods out of your diet, then reintroduce them one at a time to see what happens.  Others say to eat normally but remove one trigger food at a time to see what happens (this seems like a terrible idea – if more than one food is a problem, you wouldn’t figure it out this way.)  The lists of trigger foods vary.  They all include gluten and dairy.  Most include soy.  Some include eggs.  Some include certain fruits.  Some include certain vegetables.  Some include corn and corn gluten.  Some include all grains.  Some include alcohol or caffeine or carbonated drinks.  There’s no one diet to try.  Clearly I can’t remove all of the trigger foods from all of the diets all at once – there’d be almost nothing left to eat!
There’s also something called leaky gut.  I think that a lot of these diets are aiming to repair leaky gut even when they don’t say it, but it’s hard to tell.  Leaky gut is starting to become more mainstream in western medicine, so I could potentially find a doctor who would help me with it, but there’s no test and no treatment other than diet.  The idea is that a food allergy/sensitivity causes permeability in the gut lining, and this causes certain things from the gut to link into the blood stream where they trigger an antibody response.  Removing the trigger foods will allow the gut to safely heal.  But then once you have this, it’s very possible to develop new food allergies, so it’s possible that today I need to remove gluten and soy, and in a few years I’d also need to remove dairy, and some time down the road I’d also have to remove watermelon.  But the idea is the same – find the trigger foods.
In theory I can try all of the diets one at a time, but in reality that is really hard and I honestly can’t imagine spending years trying to find the right diet, all the time knowing that the answer may not be diet-related after all.
And having said all of that, hopefully now you see why I feel stuck.  And if you don’t, then please explain the solution to me!  I think I should try a diet, but I don’t know how to determine which one.  I’m reading books, blogs, and web sites.  I am getting advice from commenters on my blog and from twitter friends.  Everyone says something different.  What criteria would you use to make a decision?
Thanks for any clarity you can provide!!  Any insight at all would be extremely helpful!  I’m definitely at the point where I need to try something new, and I could start it tomorrow, if only I knew what it was.
Thanks,
Ms. Rants

4 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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