Sunday, January 26, 2014

A Need for Diagnosis

My friends describe me as intuitive and blunt. I'm a straight shooter and I am rarely confused about where I stand on an issue. I take pride in facing a problem head on and not being afraid to be true to myself. With my health, it's a little different. I do not fall into denial. I do a lot of research and then try just about anything that might lead to improvement. I have will power others are envious of and have mastered the most difficult diets. I'm finding these proactive and reactive battles are just the mechanics - the analytical face of things. The emotional aspect is convoluted and ever changing.

Sometimes, I uncover what motivates me and I am surprised. I'll react unexpectedly and then spend a lot of time reflecting on where the reaction came from. I think I get so focused on what I need to do to drag myself to work, and spend so much energy on pretending that I feel fine, that I don't realize I need something emotionally until my carefully constructed calm blows up in my face. This time I broke down in my doctor's office. It was embarrassing and I felt foolish. I apologized while I cried and wanted to crawl under a rock and hide. Most people would have viewed what I was told as good news, but I could only focus on one thing: I was still sick and we were not much closer in figuring out the root cause.

I was seeing small improvements, but still struggling with my health. If I ate the same thing four times, one to two of the times I would swell up like I ate something on my allergy list. I was still running to the bathroom, had a fever, and was out of energy. My lower spine was becoming painful and stiff. I was getting debilitating migraines two to three times a week. On the up side, my intestines weren't nearly as painful as they were with the c. Difficile and the bleeding was gone, but something wasn't right. My doctor ran full stool panels and I waited two weeks for the results. I was convinced they would find something. Perhaps the c. Difficile hadn't really gone away or I was dealing with systemic candida. These are things I understand because while the reason people develop them are far from simplistic, the mechanics of the bacteria or fungus themselves are really quite simple. Been there. Done that. Bought the t-shirt.

This time I wanted to know what was wrong with me, and I was apparently hoping that it was something that could be treated - I mean truly eradicated - with a medication and a difficult diet plan. It would have been frightening if the problem was c. Difficile again, but we had a plan. I would have hated to learn that I had a candida overgrowth again in my intestines, but there were long recovery steps to be taken with which I was familiar.

Instead the news was uncomplicated and the treatment plan non-existent. My intestinal flora was damn near perfect. No candida. No bad bacteria. No parasites. Every range was smack dab in the middle of where it should be and every culture was negative. My doctor was as confused as I was. I obviously had a fever and intestinal bloating, but there was no cause that could be uncovered. All that was left was a shrug of the shoulders and, "Maybe it's just lupus?"
My health seems to be a mystery to the medical professionals I have turned to. My blood work doesn't present normally, tests never seem to reveal much, but they can see and feel physical symptoms. Fevers, swelling, bloating, hives, inflammatory masses.... The doctors who frustrate me ignore the symptoms I can't fake and think I'm a hypochondriac. The doctors I respect throw every test they can think of at me, and then shrug and scratch their heads. Usually it circles back to the lupus after everything else has been eliminated, and then the rheumatologist shakes his head and says it's something else - something in the intestines themselves.

Let me take a break from the frightening unknown (I can only dwell on these things for so long) and share some positives. I stopped taking saccharomyces boulardii and probiotics for a SIBO (small intestinal bacterial overload) test and the migraines miraculously stopped. I haven't had a single migraine in two and a half weeks. It's a freaking miracle. The heartburn also has reduced dramatically. I have always tested allergic to yeasts, but apparently this means my body also does not tolerate s. boulardii well. With this break from pain, I have been able to work out nearly every day of the week. I started out slow and am up to almost an hour of aerobic activity. I am taking full advantage of this reprieve and fitting as much as I can into my day while trying to refrain overdoing it. It's a delicate balance that I frankly suck at, but having to lay around for a day because I did too much is better than just being stuck in bed because I feel like crap. The doctor feels the stiffness and pain in my spine is likely reactive arthritis and will probably ease up as my intestines continue to calm down.

The SIBO test is still outstanding, but I have a feeling it will not reveal much. If there wasn't an imbalance in the rest of the GI tract and I didn't react to the sugars taken to aggravate bacteria for the test, the likelihood of a positive is slim. Next we look into mast cell activation disorders. I have had to be on medications to help diminish mast cell reactions for years, so it looks like this is the most likely outcome. It's also unfortunate because of the lack of treatment options. I try not to think about it too much because, frankly, it's depressing and a little scary. Will I lose the few foods I have on my list of things I can eat? Will it become less manageable with time? Is this dysfunction the root cause of my susceptibility to bacterial issues in my intestines? If it's not this, what is wrong with me?

While people I know reassure me by telling me that I handle things admirably and with courage, I am tired of feeling like Debbie Downer. I am seeing a therapist and working to develop healthier coping mechanisms for stress and to deal with my past. My hope is that rehashing all of the emotions I've crammed away to achieve my stoic calm will allow me more emotional reserves in the future. I've already grown quite a bit and I try so hard. I would still like to know everything that is wrong with me. It's a need for control. I take comfort when I feel I can make lifestyle changes that will positively impact my health. I am working on letting that go and trying to focus on what is going right, but it is a struggle I'm not sure I can win. Taking things a day at a time instead of at a dead run is the greatest challenge.

Today, I accept that I am scared. I accept that my spine hurts and will limit what I expect to achieve. I am thankful that I have energy. I am thankful that I am alive.

Thursday, December 19, 2013

Prep For A Colonoscopy Like A Champ

Some folks get to wait until after their 50th birthday for their first colonoscopy, but not everyone is so lucky. If you have abnormal symptoms like excessive bloating, pain, bleeding, or diarrhea, your doctor will likely refer you to a gastroenterologist who will perform a colonoscopy. If you're really lucky, you'll also get an endoscopy (yes, that was sarcasm, although the prep for an endoscopy alone is actually much easier).

I've had some really good instruction sets for colonoscopy preparation and some really bad instruction sets. The best instruction set recommended that I started a low residue diet three days prior to the colonoscopy. A low residue diet essentially means you should avoid stringy, fibrous foods that will cling to your intestinal walls. You should also avoid any red dyes, red or purple fruit juices, and red meat because it can scare your doctor and mimic the red hue of inflammation. Some doctors recommend eating very processed white wheat products, white rice, veggies and fruit without skin or seeds, and some non-red meat. I stay away from all grains so I ate baked sweet potatoes (no skin of course), cooked veggies, cooked fruits, and white meats. White meat does include pork. Some prep instructions don't specify cooked versus raw fruits and veggies, but I figure cooked is generally smoother in texture and may go through easier - which is really important the longer you sit on a toilet when the prep solution kicks in.

The next step in colonoscopy prep is adopting a clear liquid diet the day before the procedure. A day seems like a long time to go without food, but it is worth it. Why? The less you eat leading up to your colonoscopy, the less that comes out. Fruit juice isn't something I usually promote, but I really like the Organic Lemon Recharge flavor for this purpose. Add in a lot of glasses of water to stay hydrated and perhaps some broth if you are prone to the vapors. It is very important to drink a lot of fluids and staying hydrated helps the needle go in smoothly for the IV.

The last step in prep is the least fun. Each time I've prepped for a colonscopy, I've had a different solution to drink. I've had the big gallon jug, the magnesium citrate, and MoviPrep. At first, I thought the magnesium citrate wouldn't be so bad because there were just two small bottles that fizzed like soda. I no longer drink soda, but if I did, I would have a really hard time drinking lemon-lime sodas. Still. Four years later. It was that bad. Of all the options, I have to say MoviPrep is my favorite. It doesn't taste particularly good, but it isn't vile and didn't set me dry heaving after drinking a large volume. The bar is set low...

It is easy to get chilled when drinking a large volume of liquid, so I prefer to use water that is room temperature. I get cold easily, and chilling the solution in the fridge holds no appeal for me, even if there's a slim chance that it will make things taste better.

A tough realization was that it is never a good idea to chug prep, even though it is really tempting to just get it over with. The best way to proceed is 8 ounces every ten to fifteen minutes. Drink the 8 ounces and then start your clock - don't sip throughout the ten minutes. You'll need a break from the taste and texture. Another simple thing to try is to walk or at least stand while you are drinking and between sitting on the toilet. Do not sit and wait for the next wave to hit you. Get up and move around to prevent circulation being cut off and dealing with the pins and needles later.

If your procedure is midday or later, the doctor will generally have you start prep the day before and then again the morning of the procedure. Be sure to start early. There is nothing worse than wondering if you can make the drive to the doctors office or worrying that things aren't clear enough and risking a reschedule because the camera can't see anything.

In summary:
  • Start a low-residue diet 3 days before
  • Avoid red foods, dyes, and red meats
  • Do not eat solid foods the day before - only drink clear liquids
  • Mix the prep solution with room temperature water
  • Dress warmly to avoid getting chilled from drinking a high volume of solution
  • Do not chug the prep solution
  • Make sure to walk when you can after things kick in
  • Start early!
As always, if your doctor's instructions differ, ask them what the best process is. I have found the nurses are a tremendous wealth of knowledge and generally are happy to share what they have learned from others to make the process easier.

Monday, December 16, 2013

The Colon Strikes Again

Hindsight is supposed to be 20/20, but I don't know whether illness sneaks up on me because of denial or because there is usually a slow ramp up before implosion. I suspect it's a combination of the two. What hindsight does give me is a perspective on the symptoms I present with and a realization that I tend to assume what those symptoms mean. And those assumptions are often wrong; this tends to get me into trouble. I am also learning that holding back in the doctor's office is stupid. Be brave for family, coworkers, and friends, but never hesitate to bring up a symptom and how bad it truly is without fear of sounding like a whiner in the doctor's office. If there is any place you should drone on about your problems, it is with your doctor. Holding back will only hurt you. You are your best and only advocate in the doctor's office, so speak up for yourself.

I will practice what I have learned going forward. Fingers crossed.

My lupus is pretty mild, which I attribute to a super healthy diet and low dose naltrexone. It's not because it started out mild mannered. My first flare lasted over a year and a half and was very difficult to get under control. I have had some flare ups in symptoms since my major flare in 2007, but most of my issues have been peripheral complications that I probably wouldn't have if it weren't for lupus. The most common issues involve my digestive tract. More specifically, I have a really hard time keeping the bacteria in my gut at a healthy balance.

April is when the first serious warning signs started to show up, but I explained them away. Periodically, I would have bright red blood in my stool. Because it was bright red, I wasn't overly concerned. If the stools are black or very dark, then I worry. That was the first really bad assumption. Then I started getting uncomfortable cramps in the descending colon area - but I've always had a tendency towards diarrhea and intestinal spasms, so I didn't think much of it. I even ignored the more frequent bowel movements reasoning that doctors just stuck me with the IBS label in the past without doing any bacterial/parasite testing, so why not just assume it's more of the same?

I made it until the third week of June before I got hit with a fever over 102F and started presenting with symptoms of appendicitis. My belly was extremely tender, especially in the right lower quadrant, even to the point of making my breath catch when I stood on my toes and then dropped hard on my heels. My neutrophils were through the roof, which is a strong indicator of bacterial infection. My doctor had me rush to North West Hospital and get a CT-Scan. They left the IV in operating on the assumption that I was probably going to get carted off to surgery, but the CT-scan was completely negative. My doctor had me do a bunch of stool tests and then start on a couple different antibiotics - ciprofloxacin just in case it was early appendicitis and flagyl just in case it was c. difficile.

Annie is a most excellent "sick helper" and seems to like the extra heat 
she gets from my fever. In fact she's on my legs right now. She was a
constant companion during my medical leave. I think she was disappointed
when I had to go back to work.

The relief from the antibiotics lasted almost a month before the bleeding and severe cramping started again. The cramping was in a different area this time, so appendicitis was not suspected. Stool tests for bacteria were repeated and I was positive for c. difficile and put on vancomycin. Vancomycin is only used if Flagyl is not effective and is considered "the big guns" for c. difficile. I was concerned after four days with no improvement, and highly panicked after 8 days with no noticeable improvement. I still had severe cramping, frequent stools, and a low grade fever. Instead of extending the antibiotics, the gastroenterologist decided to do an endoscopy/colonoscopy. Fortunately, the doctor found no evidence of inflammation. Unfortunately, the cause of my illness was not addressed and the symptoms were back within a week and a half of the end of a 10 day course of vancomycin. I should have kicked up a fuss and demanded more antibiotics, but I assumed people knew what they were doing.

After the symptoms came back, I was retested for c. difficile. The test was negative, but my fever continued to climb and the intestinal cramping became unbearable. I was put on vancomycin again for 10 days. This time there was improvement within three days and it's been almost a month without bleeding or cramping up. I realize the bar is low if I'm excited about a lack of blood. 

My gastroenterologist told me that it's pretty common for her to see patients with autoimmune who have palpable inflammation and digestive issues without showing positive results in any of the standard tests for irritable bowel disease. While biopsies didn't show signs of inflammation, there were actually inflammation masses around my small intestines. A camera endoscopy didn't show any abnormalities despite the swelling. My rheumatologist warned me to be cautious of doctors who blame lupus when they can't figure out what is causing the problem. While it is pretty common to have a low grade fever with lupus, it's not common to have a steady fever for six months, especially if there aren't other signs of disease activity. My blood work is "ideal" other than an elevated ANA level. The sedimentation rate, C reactive proteins, standard blood counts, and other measures were within the optimal ranges. My rheumatologist found it suspicious that I have positively responded to antibiotics and suggested that I test for SIBO (small intestinal bacterial overgrowth). I'm also retesting this week and doing a full stool panel to check for many different kinds of bacteria and parasites.

Symptoms have slowly been creeping up on me again. I am a special kind of tired right now - the kind of tired that makes you feel like your brain crawled in front of a fire, curled up under a blanket, and went into hibernation. It's not an uncomfortable feeling, but it can be frustrating, especially when you are expected to perform complicated tasks. "Complicated" is a relative term. For me it normally means advanced SQL queries and intelligent user interface design, but on days like today it means remembering not to submerge the meat thermometer in sudsy water while doing dishes. And failing. Whoops.  There are some people with lupus who get insulted by The Spoon Theory, but I have to wonder if they are the folks who don't have fatigue (there isn't just one flavor of lupus). That being said, my friends and I have found it a helpful analogy.

I'm not sure what my test results will reveal, but if there is evidence of c. difficile again, I may switch to a gastroenterologist who is open to a fecal transplant. It's a fairly new procedure, but the results doctors have been having with the procedure are extremely encouraging. It's one of the only things that works with antibiotic resistant c. difficile. My husband, brother, and a coworker have already volunteered to go on my restrictive diet and test to see whether they are eligible to donate. C. difficile is a serious infection that can be life threatening. I am learning that it is extremely important to get it treated properly, and am finding my spine. I would rather seem pushy to a doctor than have complications from a ruptured colon. I am a bit discouraged - in addition to the antibiotics, I have been taking 10 billion unit probiotics, saccharomyces boulardii, oregano oil, and anything else I can find without much change.

Because I have had c. difficile in the past along with other food borne issues, I have been reevaluating how I handle my food. I had already been washing all of my produce, but have discovered that my stomach acid is too low and is no help in digesting meat or killing food borne bacteria. I have been supplementing with Thorne Betaine HCL and Pepsin (which I would never, ever recommend without testing first), and it seems to at least help with digesting meat. I have also been considering storing my toothbrush in the kitchen instead of the bathroom. Even though we close the toilet seat when we flush and wash the brush heads with food grade hydrogen peroxide, I suspect it isn't enough. We also moved the hand towels away from the toilet in the bathroom.

Other changes:
  • Use of bleach wipes in the kitchen
  • Use of bleach cleaner in the bathrrom
  • Use of gloves when cleaning the bathroom
  • Use of gloves when handling raw meat
  • Washing hands to the tune of ABC's while vigorously scrubbing. Twice.
  • Conscientious hand washing after handling laundry
  • Wiping down door handles with bleach wipes
I am not a fan of bleach because of articles I have read indicating carcinogenic properties, but at this point I'm willing to use it if it means avoiding c. difficile, I was pretty paranoid about bacteria because of my propensity for food poisoning (other people eat the same meal and are fine, but I go to the ER), but now I'm hitting Howard Hughes proportions. Hopefully things will start to pay off.

On the up side, I've figured out a good method for getting through colonscopy preparation. I suppose that's good for another blog post at least. I had a few good weeks of productive fiction writing and artwork, but I've hit a bit of a stall as things decline.

Many doctors and researchers theorize that autoimmune starts in the gut. It matches with my medical history, but does it ring true to you? 

Saturday, September 7, 2013

Doctors from this Patient's Perspective

Yesterday I visited a rheumatologist my doctor recommended when I was in a small flare this summer.  I am feeling pretty great now, with only the occasional migraine and some neck issues left over from a car accident when I was young. For the most part I am able to exercise, and I have a lot of energy and wake up feeling good. This makes me very happy! Despite feeling good, my doctor agreed that it would be good to see the rheumatologist when I wasn't in crisis. The experience was night and day, and I think I've found a rheumatologist who I would be happy to work with, which is exciting.

My past experiences with doctors have not always been so pleasant. My first flare up was very frightening and lasted about two years. Why was I scared? I had no idea why my body seemed to be staging a full mutiny. I mean, all that what missing was the burned piece of paper with a black spot and a bunch of men with cutlasses. Or maybe the black spot could be subbed out for petechial rashes and the little men could be my angry immune cells. Add in vertigo and a limp from joint pain, and I even looked like I was walking on a pirate ship. If that wasn't bad enough, I had some doctors treat me like I was a nut case. With my overactive imagination and intensity, some people may agree that I'm weird and proud of it, but I'm not a hypochondriac. I avoid doctors unless something is happening that I can't ignore, and that is especially true after that first flare up.

When I was first flaring up, I remember sitting in a doctor's exam room talking to a nurse. She asked why I was there, so I gave her the long list of weird things that had been happening up to that point, starting with sudden, unexplained weight loss. That got a look up and down my frame and the following comment: "Are you eating?"

My answer: "As often as possible." I'm 5'6 and oddly look about 10 pounds lighter than I am (not that I'm complaining!).  My normal fighting weight is between 135 and 140. I was down to 112 pounds and dropping. I had to develop an avoidance of hats because my friends told me the reason people were extra nice to me when I had a hat on was because people thought I was undergoing chemo. My brother saw me for the first time in a few months around that time and burst into tears because he thought I was dying (Did I mention my complexion was gray, too?).

The nurse just looked at me, sniffed, and said she'd go get the doctor. By then I was feeling pretty self-conscious and wondering if the nurse had assumed I had an eating disorder. I had coworkers following me into the bathroom at work because they were worried I was bulimic, so that wasn't overly surprising (to this day, I chastise people for assuming someone has an eating disorder and point out that they could just be very ill). By the time the doctor came into the room, my confidence was shot. My regular doctor was off that week on vacation and having a hard time figuring out what was wrong with me.  The usual blood panels were coming back normal except for an abnormally low white blood cell count. The reason for my visit was I had remembered a paper I wrote in high school on systemic lupus erythematosus in dogs (the irony - I chose it because it looked really scary), and that sent me to WebMD to compare symptoms in humans.  I had so many of them!

First I listed off the symptoms I could remember: sores in my mouth and nose, petechial rashes, low grade fevers, Raynaud's, fatigue, vertigo, mental confusion, weight loss, joint pain, rashes from the sun (and many other strange things), hair loss, severe digestive issues, and the low white blood cell count. I voiced my fear to the doctor and she gave me the same up and down look the nurse did. "You can't possibly have lupus. You don't have the butterfly rash, and all lupus patients have that."

How could I argue with that? So I just asked, "What about other autoimmune?"

"Are you aware that depression physically hurts?" She gave me a rather condescending speech on depression while my mouth hung open dumbly and sent me off with a prescription for an antidepressant and a suggestion that I see a psychiatrist.

I was determined to figure out what was wrong with me and continued to go back to my normal doctor when new, weird symptoms would crop up or existing symptoms would worsen. No, I didn't take an antidepressant, although after a year of continuous decline in health, the medication probably would have helped with the depression I developed as a result of the fear and emotional trauma that comes with your body doing weird and frightening things without your permission. I have never seen the "depression doctor" again, and hope she was just having a bad day and has read more about lupus because she was obviously ill informed on the subject.

My regular doctor eventually did a rheumatology panel and discovered I had an abnormal ANA level and referred me to a rheumatologist. I never seem to do things the usual way. My RNA, sedimentation, inflammation, and C Reactive Proteins were all in the realms of normal at the time, so it would seem that lupus was unlikely. However, after x-rays showed inflammation in the joints I was complaining about and an analysis of all of the symptoms, including leukopenia, I was given my first tentative diagnosis of systemic lupus erythematosus because of the sheer number of organ systems involved. Since then, I have been solidly diagnosed (lucky me) by rheumatologists.

I have learned a lot since 2007. My biggest lesson was that it is OK to shop around a little when finding a doctor. It is critical to find doctors with a personality that fits with your own, who are curious and like a challenge, and who really listen. There are some great doctors out there who have shown me compassion, empathy, and patience. I have since switched my primary care over to a naturopath/nurse practitioner who is extremely thorough and has a wicked sense of humor. He is direct, no nonsense, and has experience with people who have health issues that are complicated. I liked him so much that the rest of my family is seeing him and have been really pleased. He has referred me to a couple of specialists because of strange health issues that cropped up, and I have been impressed with both of them. He referred me to people who share his curiosity and tenacity when trying to solve a problem.

My hope in sharing this long and somewhat rambling story is that just one doctor out there reads this and does some introspection. Trust goes both ways. It is hurtful when a patient is worried about their health and their concerns are brushed aside (even if they went to WebMD and are slightly annoying). There are many complicated health issues out there and doctors are expected by their patients to be experts in all of them. That isn't fair, but I do ask that doctors take the time to listen to their patients without making too many assumptions. I know that there is a saying out there that "patients lie" because symptoms are subjective and difficult to measure. That is understandable, but take the time to research the symptoms that can be physically confirmed. When I go to the doctor, I expect them to give me some trust.

When I saw the rheumatologist yesterday I walked away hopeful. It wasn't because I was independently diagnosed again, or found someone who had their residency at a lupus specialty clinic with hundreds of patients (although that certainly is a huge plus). It was because he gave me the scheduled hour to go over my symptom and medical history, was open minded about things like acupuncture and low dose naltrexone, and respected my input on whether or not I would like to start recommended medications. He was analytical and entirely reasonable. In turn, I agree to submit to any necessary testing and agreed that if my kidneys became involved or flare ups became less manageable or more frequent, I would trust his decisions around medication. My trust around medication is not easily earned, but he shared my dislike of steroids (even though we both agreed they were effective, and he does use them if kidneys are attacked by the disease, which I find very reasonable) and actually talked to me about Plaquenil and why he approves of the medication and finds it a safe option.

I knew I found someone I would happily work with when he said: "You know, I'm not surprised you haven't had the malar rash.  I've only seen that in a handful of the patients I've worked with who have systemic lupus."

Wednesday, August 15, 2012


A few months ago, I was growing very frustrated.  I worked out five days a week and did not see any improvement.  In fact, the cardio equipment at the gym was having fits and kept telling me my heart rate was jumping over 190 when I was maxing out at a steady 170 for months and months before then.  I also was getting tired quickly and my workouts were getting shorter by necessity.

A couple months after I noticed an elevated heart rate, I started getting ocular migraines.  The first time anyone has an ocular migraine, I would imagine they go through a period of panic.  I did!  I watched as a dark amoeba shape swam into my left eye, eventually spreading until I was blind.  Instead of rushing to the hospital, I at least had the sense to immediately call my ophthalmologist.  Fortunately for me (not so much for her), the gal at the front desk gets this kind of migraine fairly regularly.  She told me to take pain killers and caffeine ASAP and find a dark room, because within 30 minutes, the pain would hit.  And it did!  I was hit first with nausea, but fortunately only retched a few times, then hid under my blankets for several hours.  Dark sunglasses became my friend.  The sun I'd waited so many months for was something I started avoiding.

Dark glasses are a girl's best friend!  That and 
cute puppies with big ears.

The surprising thing about migraines is how exhausted they can leave you.  Usually I'm abnormally fatigued the day before, and it can take up to four days after the migraine to recover, depending on the severity.  If I have a migraine without ocular phenomenon, I usually only notice that I'm tired earlier in the same day and feel slightly hungover the next morning.  With a bad ocular migraine, I feel sluggish and dull up to two days before, and my brain becomes addled after the migraine pain fades.  Immediately before and then after my first migraine, I would mix up words, not be able to concentrate, and generally stare at my boss without comprehension when he asked for anything but staring at my screen to be completed.  He'd have to explain things multiple times, and I would find myself making mistakes or mentally wandering several times throughout what would have normally been a fifteen minute project.  Light sensitivity usually only continued for 24 hours after the migraine pain stopped, and my stomach was often queasy.

The ophthalmologist was great and had me come in to check my retinas for any abnormality, just to make sure it was a migraine.  All veins also looked normal.  It gave me piece of mind.  The migraines hit at least every other week, which was very frustrating.  In addition, I had fatigue, was irritable, craved "Crunchy" foods, was dizzy and easily carsick, and my nails started breaking off.  I started researching health issues and mineral/vitamin deficiency that could contribute to the problem.  I went into the doctor, convinced that I had a storage issue with Iron.  In my mind, that meant an excess of iron.  In reality, I had too little ferritin, or the protein that binds to iron that has been stored in the body for any period of time.

A diagnosis of Anemia was a relief to me.  Finally, something "normal!" I was prescribed B12 and iron picolinate (I'm told this type of iron causes less side effects and is more absorbable).  I also purchased a heart rate monitor with an audible warning.  Any time it gets up to 180, I slow down or stop what I'm doing.  With an abnormally high heart rate, there is potential for long term damage, and who wants to throw up at the gym?  The monitor has been quite useful.

As with all things, I have no patience and was expecting my heart rate to normalize and workouts to get easier after the first few weeks.  Apparently it takes 6-9 months.  So I get to continue to wear my heart rate monitor.  Some days are easier than others and my heart rate won't crack 170.  Days like today I have to stop what I'm doing pretty frequently and take a breather.  I have noticed that I'm actually improving at some of my exercises, like chin-ups.  In the weeks leading up to diagnosis, I was actually getting worse at everything I did in the gym.

Vacations that involve a comfortable bed, a cute
puppy with big ears, and a book are the best.
I have to wonder why I became anemic.  I suppose it could be as simple as being vegan.  But it could also be from malabsorption or extremely heavy menstrual periods.  Most likely it's a combination of all of the above.  I need to be more careful with food combining to make sure I get the iron I'm exposed to and learn to recognize the signs when I'm getting low.  When I think back, it's all quite obvious. 

Thursday, July 26, 2012

Low Dose Naltrexone - Again

Mount Rainier in June

Things have been going pretty well!  I've been working out with a personal trainer three times a week.  I try to get to the gym on my own at least two other days per week.  I'm very fortunate to work for a company that has a gym in the office.  My boss is also very encouraging - he actually tells me to go take breaks.  Begs actually.  I'm much more productive when I can take a break and get my endorphin levels up! 

Mr. Champ has been excellent.  He is still on his low dose naltrexone and we haven't seen a recurrence of cancer.  He did have a pretty bad elbow injury (from slipping on a wet dock) that led to us discovering that he has lived his life with elbow dysplasia.  He has always liked his walks, but we've had to be careful not to jog or do much running, even when he was young, to avoid limping.  He is still on a glucosamine and MSM supplement and we did Adequan shots for several weeks.  The shots helped, but what really got him back into shape was swimming at Wellspringk9 in West Seattle.  Champ is one spoiled pup!  He is a nervous dog that doesn't usually like people he hasn't accept in his immediate pack touching him, but I could tell he really got into his massages and swimming sessions.  I would drop him off and then sneak back into the pool and see him lounging luxuriously by the side of the pool in Gretchen's arms.


For your viewing entertainment, I've included a video of the dueling puppies.  Annie is a bit of a stinker and loves trying to steal Champ's food.  No dogs were harmed in the filming of this video and Champ ends up the victor.  He is one smart dog!  I love a happy ending...
I recently decided to take a creative writing course for fun.  I've noticed that the quality of my writing really tends to dip when the material is difficult.  It's much easier to write about the weird, the funny, and the enjoyable.  But - sometimes things need to be written regardless.  I thought I would share my "epiphany" assignment.  

Exploring the Alternatives

“Between your test results and how many systems the disease appears to be impacting, I’m prepared to diagnose you with Systemic Lupus Erythematosus.”

I sat with my mouth gaping open stupidly as my brain struggled to process what the rheumatologist was saying.  Even though eight months of pain and illness led me to suspect lupus as a possibility, hearing it as a diagnosis was devastating.  I could only manage a raspy squawk when the doctor said she wanted to prescribe an antimalarial drug and wait until the disease progressed further before moving to medication that was more powerful.  

A few months before, I was diagnosed prednisone after a trip to the ER.  I was surprised at how quickly my pain diminished and energy levels skyrocketed.  I was also amazed at the things that would come out of my mouth at the slightest provocation.  Part of my consciousness would quietly suggest that I just stop talking while the dominant, cave-woman-like consciousness would grunt and yell because I wasn’t getting my way.  It took weeks for my normal temperament to make a re-emergence while my illness swelled back to overwhelming proportions.  

I was conflicted about starting a medication.  I was in constant, agonizing pain, and had even considered whether I wanted to go on living if that torment was what I had to look forward to every day.  At the same time, I was hesitant to start any medication with a long and serious list of side effects.

“Do I have to go on medication now?” I asked.

The doctor looked me up and down, then flipped through my medical chart.  “No.  Your white blood cells are almost back up into normal range now.  Your other indicators are OK.  Come back if you have any more changes.”  The doctor looked thoughtful.

I smiled at her and said, “I just need some time to think.”

“OK, but we have options.”  She stood up briskly, said her goodbyes, and hurried to her next appointment.  My mom helped me up from my chair and supported me as we walked out to her car.

The previous eight months were spent talking to doctors that offered conjecture and insults when I sought answers. It started with a 15 pound weight loss in one month.  A nurse asked me if I was anorexic.  Then I came back with sores in my mouth and throat, low grade fevers, another 15 pounds gone, and exhaustion.  The doctor asked me if I was a drug addict.  The throbbing pain in my knees and hips started next and my fingers would turn colors in the cold. I was frightened when my vision would tilt 45 degrees.  My hair fell out in small clumps, my complexion was gray, arthritis came and went, capillaries burst on my arms and neck, I dropped 45 pounds, exhaustion ruled my days, and it hurt even to have a sheet resting on my tender abdomen.  All of this, and the doctor tells me, “Depression hurts.”  Honestly, I wanted to hurt her, but I started doubting myself, wondering if it could really all be in my head.  How could it be?  I felt like a 27-year-old woman trapped in a 95-year-old body.  

As my mom and I drove home, I blurted out, “There’s got to be a better way to treat this.  I don’t think I’m going to find my answer with traditional doctors.”

“OK,” was my mom’s initial reply.  She appeared a little startled by my sudden statement after nearly twenty minutes of silence.  She took a few minutes before saying, “We’ll get grandma to do some research.”

My grandmother had her family on vitamin supplements and herbal concoctions well before it was trendy to do so.  When we got home from the doctor’s office, grandma started pulling out her tomes on natural healing and thumbing through her journals she orders through the mail. She unburied an article from her pile of papers and sticky notes on Low Dose Naltrexone or LDN by Dr. Julian Whitaker.

“Says here people are having success with MS and AIDS.  Maybe you should look into it,” she said as she thrust the article at me.  “Be sure to have your mom make copies.  That’s my original.”  Grandma is stingy with her information.

I went home to research LDN online and was impressed with what I found.  There weren’t too many research articles at the time, but there was a strong online community and plenty of people willing to give testimonials.  The research studies I did find from Penn State related to LDN and Crohn’s disease were impressive, with a high percentage of patients responding to the therapy.  Reported side effects at the 4.5 mg dosage were minimal.  While I couldn’t find any cases of people taking the drug with lupus, enough people and doctors were willing to vouch for its effectiveness with AIDS and congenital autoimmune diseases that I felt I didn’t have much to lose.

I went to a medical doctor I hadn’t seen since I was a child who was known for alternative therapies.  He wasn’t surprised with my lupus diagnosis because of all of the issues I had when I was younger.  Fortunately, the doctor was very open to prescribing the LDN.  It took a couple days for me to notice a change in my energy levels with the medication, and about three months before I could use that energy without my body screaming at me if I tried to do too much.  I was excited when the pain decreased along with many of my other symptoms.  I went on to read about dairy and gluten interfering with the medication and cut them out.  I felt so much better, I started researching alternative diets to treat inflammation and decided to go vegan, cutting out all processed foods.  My energy levels improved to the point I could work a full work week and still have energy to pursue hobbies at the end of the day.  I decided to start exercising, only able to start at 5 minute intervals of light activity.  Now I work out for an hour four to six days a week, alternating cross training and cardio.

It has taken me years to get back to feeling normal.  I have set backs and small flares, which are frustrating, but I’m convinced the path I chose was the correct path for me.  I work closely with my doctor and follow his instructions, but encourage others to be informed patients and explore their options.  You never know where it may lead you.


Monday, March 5, 2012

Staycation, The China Study, Celebrity Diabetes

Champ - Frisky in the snow. Still doing awesome 1.5 years after mast cell cancer

I am enjoying the first few days of vacation. My last post was about stress, and it was appropriate. I have just finished a couple of huge projects at work and had the wits about me this time to schedule some vacation after things wound down. I have been enjoying several books and down time with the pups. I probably have not been as good as I should be about working out, so I'm going to try a few of the drop in classes available in my neighborhood in Seattle. Zumba is a great cardio work out, and I may try a Pilates class as well. Yoga was my go to when I had less energy and was not feeling well, but unless I'm engrossed in a book or trying to garden, I don't sit still well and tend to fidget.

For the first time in several years, my health hasn't exploded as a result of a stressful project. One of the VPs at work commented on how happy she was that I'm doing so much better than the past. She and others had been watching to see what kind of toll the project would take and were all really pleased that, while I looked exhausted and had some break through symptoms, I didn't spiral or lose 20 pounds. That's usually one of the first signs that I'm going into a large flare-up - dramatic weight loss. I lost about 5 pounds during the last couple weeks of the project, but it required very long hours and work over the weekends, so that isn't too surprising. I missed a week of being in the gym and my neck seized up for a day, but I was able to get into the chiropractor and get a couple massages, and that worked wonders. After we deployed the new CRM, I was able to get right back in the gym for an hour a day.

What was different this time? I took some time to think about it and I truly believe diet and exercise played a huge role here. I had some break through symptoms - stomach pain, spinal pain, and fatigue. These were more evident when the project was really ramping up and I didn't make it down to the gym. If I made it down to the gym mid-day, I didn't get spinal pain later on. If I missed working out, my neck was stiff without fail. It was a weird feeling, like my head was too heavy for my neck to carry. I stuck to a 90% raw vegan diet, and the amount of cooked I did eat was strictly vegetable based. I stayed away from grains of any kind, including quinoa or rice, and just loaded up on leafy greens, fruits, and other vegetables.

A couple months ago, I picked up The China Study for the first time. People had been telling me to read the book, but I just never took the time. I wish I had picked that book up a lot sooner. I don't know how people with extreme health issues could read that book and not want to make some lifestyle changes.

T. Colin Campbell dedicated much of his life to researching the effects of diet on many chronic diseases that plague Americans and other richer societies. He was involved in a 20 year study in China, documenting several aspects of diet, environmental exposures, and taking blood, tissue, and urine samples to measure different values like cholesterol, fiber intake, and blood glucose levels and their correlation to different diseases. It was a rare opportunity to study a fairly consistent genetic population to determine why certain diseases were more prevalent in specific areas of the country. Health issues tended to cluster in certain populations, and while other regions may have similar toxin exposure, they may have different levels of disease. The diseases were more active in populations that had higher animal protein consumption and lower plant and fiber consumption, even when all other factors were fairly constant.

Lance and Annie - promoting an active lifestyle

The book does a phenomenal job of explaining how diet plays a role in many prevalent diseases such as diabetes, cancer, heart disease, auto-immune, and several other ailments that plague us. The book is based on scores of research studies, including the most comprehensive epidemiology study that been done to date, the China-Cornell-Oxford Project. It explains that we are not doomed by genetics. It is very empowering to read a thorough explanation of why we have more control over our health than perhaps we'd like to admit. While genetics may determine which diseases we are more prone to, we can largely control disease activity through diet and positive lifestyle choices. It was discouraging to read his synopsis of auto-immune and how it is really not completely possible to reverse it by diet alone, but we may be able to minimize, if not put the disease into remission. I have witnessed that myself to a large extent through strict diet and an exercise regimen that works for me as an individual.

I have met many people in my life who have learned of a disease or allergies and chosen to ignore them because they felt it was simpler than addressing them head on. This always makes me very sad. Celiac, as an example, is a very dangerous disease to ignore. Continuing to eat gluten causes the immune system to break off the villi that are instrumental in nutrient absorption in our intestines. This leads to death by starvation! I don't think doctors emphasize enough how dangerous it is to continue eating gluten as a Celiac, and I think many of them do this because of the number of people they have watched ignore their advice and carry on doing irreparable damage to their intestines rather than hoist up their shorts and throw a little effort into meal planning. If they see people doing this day in and day out instead of heeding their advice, I can understand why they become discouraged, but I think it should still be emphasized for the one or two people who would rather spend additional hours a week prepping food and feel well rather than walk life through a bloated, uncomfortable fog. This day and age, we have numerous options out there that are gluten free and convenient, so the excuses really need to stop.

I also wish celebrities like Paula Deen realize that they are role models and could set a wonderful example by doing some research and making life style changes. I would much rather watch her go through a personal transformation and preach to us about the pleasures of healthful food that also tastes great rather than how to make a pound of steak per person with tomato puff pastries and canned peas soaked in a stick of butter. After being on a plant based diet for years, my tastes have changed to the point of feeling overwhelmed and queasy when I walk by a hot dog stand or the cheese section in the grocery store (your tastes change - I gravitate toward clean, whole foods and can't stand anything that is overly pungent). Every time I have the Food Network on in the background and Paula Dean's show comes on, I feel sad and have to flip the channel. It is her choice. but it is simply not true that she is only hurting herself. People look to her as an example and she personifies Southern Hospitality and Living. I am certainly not blaming her for coming from the region of our country that is most plagued by Diabetes, but does anyone stop to think that the epidemic might be because of the soul food that is high in cholesterol and low in fiber?

"A can of peas and a stick of butter?! WHAAAAA???"

Most of us know people who have been stricken with Diabetes, and it is a scary, ugly disease that often leads to amputations, blindness, kidney disease, and other horrible complications. The factor with the highest correlation to diabetes is increased fat intake. Even low-carb, high fat diets have been correlated to increases in diabetes. Several doctors have had great success reversing the effects of diabetes (type 1 and 2!) through a plant-based low fat diet, even to the point of reducing insulin requirements by over 50%. Now, why would you plan to forge ahead with medication only, continuing to eat the foods that damaged your body in the first place, only to slow progression instead of trying to turn it around? Well...maybe you want to stick the lifestyle you know. Or maybe you have a pharmaceutical endorsement deal... Nice, Paula Deen. Very Nice.