My Chronic Illness is Worse Than YOUR Chronic Illness

AKA the joys of comparing our pain.

So, I linked my last post to facebook because frankly its time someone in the medical community took the plight of the needlephobic, especially those of us who deal with a chronic illness, seriously and I happen to have at least a handful of friends that are in the medical profession. Two of whom train nurses. And I got THIS in response: 

 Usually on posts that I disagree with most people on, I stay away. But this one, hit home.

Like you, I suffer from an extreme fear of needles. Have ever since I was very little! There have been many times when large clinics/hospital departments have needed their entire nursing staff to assist the shot-giver because I was so terrified and wanted to move out of the room and never come back. 

HOWEVER, labeling this as a "chronic illness" simply, well, offends me. Living with a chronic illness is completely different than an extremely-strong fear of a medical device. I live with some chronic illnesses and this fear.. so I do know the difference; personally. 

When you live with something like Eosinophilic Esophagitis, MS, the aftermath of a severe stroke, Parkinson's, diabetes, severe-food allergies, artery disease, lime disease, sleep-apnea, chronic bronchitis, arthritis, and even asthma: you have to adapt to life, manage, and take emergency/precautionary efforts for your own livelihood EVERY DAY. Needles are a once in a while occurrence that *generally*, you can plan for.

Now clearly the poster hadn't bothered to pay the first bit of attention to where this conversation originated since "X" includes at least one of his "acceptable" chronic illnesses but that's so not the point. One of the things that this post reminds me of is the constant need by some folks to play the comparison game. I know enough of this kid's history to know that yeah, he deals with a pretty brutal chronic illness (because I bothered to read the things he's put out there about it) but that doesn't give him or any of us the right to invalidate the experiences of others. Who died and made us the chronic illness police? 

In the United States ONE IN TWO people has at least one chronic medical condition so really there's no place for the comparison game. When something affects half the population its rather pointless to pretend that having a chronic illness makes you special somehow. Now granted the kid in question is somewhere between 16 and 18 years old and I'm trying really hard to cut him some slack based on the fact that his brain isn't even fully developed yet but if you're going to get offended and start playing the my chronic illness is worse than your chronic illness game you do so at your own risk. 

As far as trypanophobia being a chronic illness itself, one that wasn't at all what I said or implied and two a phobia by its very definition requires the exact same adaptations and management that living with a chronic illness does. And it complicates any chronic illness that it is comorbid with. He actually did a beautiful job of illustrating my point about how little compassion people with trypanophobia get. 

Trypanophobia

Hi my name is Terri and I have associative Trypanophobia. For those not familiar with the term it is a form of Trypanophobia caused by a traumatic association in my case from a series of daily injections over a two week period when I was barely two years old and reinforced by a god awful gamma globulin injection when my dad got hepatitis when I was 10 or 11. Oh, its the term Trypanophobia you're not familiar with...well if you haven't figured that one out by now, it's fear of needles, and its a phobia that the medical community fails miserably at dealing with in a productive manner.

I'm ranting about Trypanophobia tonight because both my best friend and my daughter have to undergo medical procedures tomorrow that will require needles. Since my daughter hasn't had blood drawn, ever, before now we don't know yet if she's Trypanophobic or not. My best friend on the other hand has a form of Trypanophobia that can actually be dangerous. Vasovagal Trypanophobia is the most common type, affecting 50% of us, I have had episodes of this type but it is not my primary type. The vampire has to have REALLY screwed up for me to head into vasovagal syncope. It's actually an inherited type with 80% of sufferers reporting a first order relative who has it as well.

According to the wiki on Trypanophobia Vasovagal: The physiological changes associated with this type of phobia include feeling faint, sweating, nausea, pallor, tinnitus, panic attacks and initially high blood pressure and heart rate followed by a plunge in both at the moment of injection. It's this vasovagal shock reflex that can be dangerous to the patient and in exceedingly rare (23 documented) cases actually fatal.

Now, you would think that a phobia that has the potential to cause actual physical danger to the patient would be treated with at least a little bit of compassion and concern by the medical community, after all the first principle of the hippocratic oath is "Do No Harm" but in my experience this is rarely the case. And if the patient is MALE the lack of compassion and downright refusal of medical personnel to be helpful is especially shocking.

I have encountered lousy attitudes and a lack of willingness to accommodate my Trypanophobia most often in Emergency room and Surgical settings. My internal medicine doctor knows that I will, and have, simply walk out if I get a bad attitude or worse a bad vampire. Consequently he sees to it that I get the very best they have to offer and if that means coming into the exam room to me where I can lay down and do my relaxation exercises rather than asking me to sit in the lab that's what they do. He also knows that if I say, I am not in the right head space for this today its in all of our best interests NOT to try. We have an understanding, one I broker with every new physician that I partner with on my health care team, I am in charge when it comes to needles. Yes, I can and will fire a physician over this issue.

Now as a woman I might get an eye roll when I lay out the fact that I am needle phobic but ROUTINELY without ever having to ask for it I am offered the option of an oral sedative or anti-anxiety med when I have to have a planned procedure that involves needles. I generally don't take those because they don't seem to help me personally as much as finding my zen via ocean sounds on my MP3 player and self-hypnosis techniques BUT they're offered. My only major problems have been in emergency settings where I usually come out looking like I have been beaten from the bruising from failed IV placement attempts. Consequently I have to be SERIOUSLY ill or in pain to even consider an ER visit.

My best friend on the other hand has to ask, BEG actually, and even then he is ROUTINELY refused. Today it happened IN WRITING from a new PCP that couldn't even be bothered to tell him herself to "get over it". He's actively had medical personnel make fun of him while in the midst of a vasovagal reaction. He's spent this entire week patiently attempting to educate his medical team about this and rather than offer him any kind of quality of care they've stated that "needs to overcome his fears". Thanks to the small health food store there and a few resources I had here we've figured out a few natural things to hopefully help him through tomorrow but damn it it makes me furious that we have to go to this extent to manage what is clearly a common issue.

In every other country the numbing cream EMLA is available over the counter, parents routinely purchase it and apply it on their kids prior to needle procedures. In THIS country you have to have a prescription and in order to GET that prescription you have to be able to be taken seriously and dealt with compassionately. Clearly that's not happening here.

I am really angry. Life with a chronic illness sucks. Life with a chronic illness that requires regular blood draws sucks even more. Adding Trypanophobia to the mix adds yet another degree of suckage. Having to FIGHT to get a compassionate response from the medical personnel who are supposed to care for you though is the peak of suckiness and for those of us with this phobia who also possess a Y chromosome it seems that even the fight is too often futile.

I don't know the answer but its about damn time to raise the issue.

Syndrome X and Celiacs

Hey guess what X'ers! Apparently we're at a higher risk than the general population for Celiacs. I was diagnosed (waiting blood and/or biopsy confirmation) on Friday. My doctor says there is a confirmed link between diabetes, hypothyroid and developing Celiacs disease. I'll be doing my research and posting my findings here as I learn to add this new variable to the science experiment that is life with Syndrome X. Meanwhile if any of you have any links or wisdom to share, that's what the comments are for!

Working With A Personal Trainer

One thing that every resource on "X" agrees on is that exercise is a powerful tool in managing the condition. Exercise lowers bad cholesterol. It lowers blood sugar. It stabilizes blood pressure over time. It produces endorphins that help manage the depression that often accompanies life with a chronic illness. So exercise is a very good thing.

Unfortunately with meds that cause weight gain, "X" related fatigue, blood sugar medications that can cause exercise induced hypoglycemia all working against us many X'ers are not friends with the gym. In February a new Kroc center opened in Memphis. The Kroc centers are large community centers funded by the generosity of the late Ray and Jean Kroc the founders of McDonalds through the Salvation Army. Ours has a 300+ seat theater, a state of the art aquatic center, a full size indoor soccer field, a basketball gym, 12 garage band bays, an outdoor splash park and playground and a phenomenal fitness center. My charter membership came with two free 30 minute personal training sessions and my daughter and I used those today.

I have to say that I worked harder in the gym today than I have in my entire life. Having been around athletes for my entire adult life I'm familiar with the expression "Leaving it all in the gym (on the court, on the field, on the track...all the same idea)" but I have never experienced it. I'm not athletic. I make no bones about that fact. I was grateful that when I was in high school marching band counted for all that one of our required P.E. credits. I do dance. I love that. Even in dance though, I am not a disciplined student. I don't practice as I should. Activity is not something that comes natural to my personality and makeup. So what made today different? Today I worked with a trainer.

My trainer's name is Tim. I am sore all over. In a good way. He had me stretch and then he had me doing squats and ball pushups and rowing and something called a farmers walk that had me walking around the gym carrying 25 lbs in each hand...then cardio...when I stepped off the treadmill my leg muscles were so fatigued that I felt like I was going to go all the way to the floor.

As I am typing this post I am sitting in the back row of the theater at the Kroc listening to rehearsals for "Best of Broadway" (BOB as we affectionately call it at our house...my daughter is the stage manager) and drying off from spending half an hour in the hot tub. My reward for surviving.

I have another appointment with Tim in 2 weeks. What have your experiences working with trainers been? 

Thoughts on Coping With A Chronic Illness and So What IS Syndrome X anyway?

Thoughts on Coping With a Chronic Illness - Being sick sucks. That, in a nutshell sums up my thoughts on the matter but since that doesn't make for a terribly informative blog entry I should probably elaborate somewhat.

In 1995, when I was pregnant with  my daughter, a routine glucose tolerance test showed that I had gestational diabetes. Evidence of course that God has a great sense of humor since I had a lifelong phobia of needles. In one morning my life became and endless regimen of finger-sticks and carb counts and learning to draw saline solution into a syringe and inject it into my thigh in preparation for eventually doing the same with insulin.We had prayed for so long for a baby that honestly at that point making the adjustment was effortless. I would have done literally ANYTHING in order to make sure she was safe. And besides, it was only a few months, most women with gestational diabetes return to normal after delivery, I could do anything for a few months. Right?

By checking my sugar religiously 5 times a day and eating prescribed combinations of carbs/protein at set intervals during the day I managed to avoid injected insulin. A feat my endocrinologist insisted couldn't be done, but then again I was carrying a baby that my gynecologist had said couldn't happen either. On September 5, 1997 I gave birth to a beautifully healthy 7 pound 10 ounce baby girl and I left the hospital weighing 29 pounds LESS than I did when I got pregnant in the first place.

Everyone was SO certain that my sugar would return to normal once Jessica was born that no one, including me, bothered to check and see if that was what had actually happened. Being consumed with the demands of adjusting to being a mom, I don't think I noticed that the weight was not just creeping but piling back on. My eating habits hadn't changed and other than the fact that I was craving sugar more than usual I wasn't exhibiting any symptoms that something might be wrong.

I was doing research on the internet about drugs for PCOS (polycystic ovarian syndrome) the condition that had made it so hard to get pregnant in the first place when I discovered that a diabetes drug, Glucophage (generic name Metformin) was showing promise in experimental trials with PCOS patients. (It is now the standard drug prescribed for PCOS) I took the printouts and headed off to see my doctor. Jessica had just turned two.

On November 10, 1999 I sat in my doctor's office and showed her the research I had been doing. (I had this wonderful doctor that actually appreciated educated pro-active patients.) She scanned it and said, "Let's draw a sugar check on you. Your insurance won't cover glucophage for this but if your sugar is anywhere CLOSE to abnormal I think I can make a case for it with your history." I'm not sure which of us was more shocked when my fasting bloodsugar was 141, well over the 123 threshold to be diagnosed with Type II diabetes.

Suddenly it all clicked into place. the SEVENTY pound weight gain, the fatigue, the vision changes. I was one of the fraction of women in whom Gestational Diabetes had NOT gone away. I was full blown diabetic. this was NOT in the plan. Over the next four years one diagnosis merged with another until the diagnosis of "Syndrome X" (Now also called Metabolic Syndrome and/or Metabolic Syndrome X) was reached

So What IS Syndrome X Anyway? 

Syndrome X is a cluster of 5 related disorders that, in addition to being a royal pain by themselves, are also a major predictor of future heart disease. Did I happen to mention that my father has a heart condition?

Syndrome X in a nutshell (from the book "Syndrome X" by Challem, Berkson and Smith)

"Syndrome X refers specifically to a group of health problems that includes insulin resistance (the inability to properly deal with dietary carbohydrates such as sugars, as well as one or more other problems, such as abnormal blood fats (elevated cholesterol or triglycerides), overweight and high blood pressure...

The key underpinning to Syndrome X is insulin resistance -- a diet caused hormonal logjam that interferes with the body's ability to efficiently burn the food you eat. Syndrome X occurs when the insulin resistance is combined with high levels of blood fats (cholesterol and triglycerides), too much body fat, and high blood pressure. Both insulin resistance and Syndrome X increase your risk of heart disease and diabetes -- and many other serious life-threatening diseases -- because they affect, directly or indirectly, virtually every disease process." 

Which is a long complicated way to say that my body doesn't use insulin efficiently which puts me at risk of burning out my pancreas and needing injected insulin. It also doesn't process cholesterol efficiently which puts me at risk of potentially deadly arterial plaques. It ALSO hangs on to every ounce of fat it possibly can and all of that combines to drive my blood pressure up. In short, its a pain in the ass.

Who I Am and Why This Blog

If you've found your way here I'm guessing that you or someone you love has been diagnosed with Syndrome X or as I think they are calling it these days, "Metabolic Syndrome".

I'm not a medical professional. I am just a person who has lived with Syndrome X for years. I have a private blog here on blogger that I have been blogging my life with Syndrome X since 2003. I have been debating for a long time making that blog public but I decided that for many reasons I'd prefer not to do that. Still I have a perspective and a voice that I think is valid to the public conversation about living with Syndrome X so I created this blog. I will be migrating posts that are applicable from my private blog and I will be posting here from time to time as I encounter new information or new challenges.

Welcome.