....except I don't like worms, so let's just say it's like trying to hold an octopus in a string bag. Every time you think you've got it all contained, another leg pops out. You might want to get a cup of coffee, this could take a while.....
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My health update is long overdue, I know. I've delayed writing it for so many reasons, but mostly because after 3 months I really don't have anything definitive to say. It's also because, no matter how I say it, there will always be someone who will always be sicker. Horrible to say, but true. It puts me in a weird position, that of journalist what's going on but not appearing as though it's a contest. Lord knows, it's a contest I'd never want to win. But in truth, most everyone has something going on with their health be it an injury or condition, that we all can relate in some way. And much like my sharing our trials and tribulations of becoming gluten free, the hopes is that whatever I am going through, if it can help someone figure out what's been going on with them, or even feel better about their own condition, then my journey has not been a complete waste.
Nine years ago I went to the doctor for carpal tunnel. A job related hazard from the repetitive motion of flipping through letters and casing magazines, I was told there was not much to do other than braces and Advil. Which I did. Over the years the braces became ineffective and the Advil dosage inched it's way past recommended. The carpal tunnel reached my elbows and the pain would be so severe at night I would wake up unable to feel/move my arms below the elbows. Recently there have been mornings so bad that Tony would have to stretch my arms down and vigorously massage and rub the tendons until I regained feeling. This is my normal.
Seven years ago I sat in a surgeons office discussing removing my gallbladder when he told me that he felt my symptoms appeared more like Celiac than chronic gallbladder issues. How I made it all the way to the surgeon with no one noticing this is beyond me, but I pushed the surgery off, changed my diet, and have had no issues since. Within weeks I also had no signs of the acid relax that had long since plagued me to the extent of damaging the muscle at the bottom of my esophagus.
Five years ago I was having serious issues with my eyes being dry. I had actually developed iritis, or swelling of the iris. I was given a prescription for allergen eye drops and sent along. The dryness persisted, I lost half of my eyelashes (along with 2/3 of the hair on top of my head) and still, I was told it must be my allergies to paper dust and pollen. I continued using an OTC eye drop, stopped wearing my contacts, and eventually found a new eye doctor. She suggested daily contacts to minimize irritation and again, to continue using drops. Two months ago I had a routine eye exam and, still plagued by the dry eyes, I asked for the Rose Bengal test, where they put a dye in your eyes and determine if you have corneal damage and measure the amount of tears you produce. I failed miserably. While I have managed to escape permanent corneal damage, I produce virtually no tears now, which I am
finally now slowly correcting with Restasis.
Last year I trained for the last 3-day breast cancer walk in Boston. I was running a 5K per week, plus 3-5 miles 3 times a week. I was also doing training walks on the opposite days of 6-12 miles a day. Remember too, that my job requires me to walk 3-5 miles day carrying 40 pound buckets of mail around. So it would stand to reason that by the time the walk arrived, I had developed plantar faciiitis and micro tears on the inside tendons of both calves. I was x-rayed, MRI-ed, consulted, fitted for custom orthopedic insoles, and continue to do PT exercises even now. Eventually I had received cortisone shots (which worked for about a week) and was given more anti inflammatory medicines, enough to cause kidney failure. And of course, while everyone knew I was taking high doses of NSIADs, no one felt it was necessary to monitor my kidney function.
In May I decided to take it all and go back to my regular doctor. Who of course, is always too busy to see me, so I saw the NP who I really like and have seen multiple times. The theory was to put everything together and see if they weren't just pieces of a bigger picture. I was also having extreme fatigue, had joint pain in my knees and hips, along with a host of small new annoyances. She took 6 vials of blood thinking it was my thyroid, but ran some additional tests just to be sure. My thyroid numbers had in fact jumped a full point, but were still within normal, but my IFA ANA came back positive. Meaning I had one of over 80 auto immune diseases, so I was sent to a Rhuematologist.
Three weeks later I was back in the doctors seeing another NP (that I also LOVE) because the PCOS that I have had since I was 20 was flaring up. (This would be the fireworks I mentioned in a previous post). She sent me to ultrasound that showed that I had multiple cysts rupturing at the same time causing extreme pain, and after consult with the GYN, have now developed severe endometriosis. She put me on two different hormones that weeks later have subsided most of the pain and the cysts seem to be behaving themselves. Although the real result will be in a month when another ultra sound will be done to determine if my body has resolved this, of if I will need surgery to permanently correct this. The NP also ran more tests and ordered 7 more vials of blood, as thyroid and PCOS are closely tied together, and sure enough my THS had jumped almost another full point, but still not out of the range of normal.
About a month later my appointment with the rhuematologist came up. Armed with my list of 30 symptoms, test results and x-rays, I went in expecting exactly what she thought.
Sjorgen's, is an auto immune disease that effects the organs that hold moisture. For most it only effects the eyes and salivary glands and is nothing more than an annoyance. It is managed symptomatically, often takes years to diagnose, and is found 90% in women around age 45 (I'm 39). In some cases it can effect major organs such as your heart, liver, kidneys and in extreme cases lead to non Hodgkin lymphoma. It often accompanies RA or Lupus, but can be a syndrome all it's own. It would explain my excessively dry eyes, fatigue, carpal tunnel and inability for my ankles to heal (which everyone now feels is EARLY onset RA), and the appearance that my thyroid is failing (accounting for the hair loss, weight gain, and flair up of PCOS).
She ordered more x-rays, and you guessed it.... 5 more vials of blood, from which every test came back fine. My RA number was high, but still within normal, same as the Sjorgen's numbers, and the definitive Lupus numbers that came back negative. I was then sent to an ENT for a lower lip biopsy where they cut open the inside of your lower lip, pluck out the little seeds (those little bumps you feel when you run your tongue between your lower lip and your teeth) and check them out to see if the white cells are attacking the healthy ones. And after all that... there wasn't enough tissue to make a definitive diagnosis. *sigh* Now, I was fully aware that this could happen. The glands are very small and hard to harvest. Even the Mayo clinic has a 20% fail rate. The good news? The tissue was totally healthy, which combined with my "normal" white cell counts, means that Cancer is off the table. Bad news? It can't be used as a definitive diagnosis since it was inconclusive and I'm not doing it again. Friday I had my appointment with the rhuematologist to sum it all up with a nice neat bow. Her decision?
Connective Tissue Disease (Unspecified)
Which basically means they know I have something, but they are still not sure what. So, for now it will be managed symptomatically and at my routine physicals they will run the blood tests again to see if anything pops up. She did run one additional test for Lupus. It's new and I needed to fill out additional insurance paperwork because it's quite expensive (over 1K). Once everything comes back, she will be attempting to treat my joint pain and fatigue with a new medicine. It has low side effects in low doses and has been successful with RA/Lupus/Sjorgen's patients. If it works, great. If not, we wean me off. And it's not an NSAID, so no major risk to the kidneys.
The kicker to the entire process is that while at the ENT's office, he had asked me if anyone was monitoring my kidneys and I said "No.". Which made him concerned, so I went back to my regular doctor and insisted they run one more blood test to check for renal failure since it often mimics thyroid disorders. Two more vials of blood later, while the numbers aren't ideal, they are still within the range of normal, so thankfully the high dosage of NSAIDs didn't create any significant permanent damage. He also asked what my thyroid ultrasound revealed and I told him that I had asked for one and was denied, as the numbers didn't warrant it. Which he thought was crazy, so he ordered one anyway.
Turns out I have several nodules on both sides of my thyroid, one of which is larger (9mm) that has some calcification and abnormalities.
*sigh*
The biopsy for that is tomorrow.
Fingers crossed.
Because let's face it, when it's all said and done I'd like nothing more than to NOT be sick and tired. But if that is not an option for me, I owe it to my kids to do everything in my power to be as healthy as I can be. This post is more about documentation than anything else, I am not looking for sympathy or even empathy. But if someone somewhere is also being told that all their symptoms are psychosomatic, or that they are just getting old, know that I have been there....
Paying hundreds of dollars on co-pays and non-insurables....
spending hours in the waiting rooms, reading the same magazines (over and over)....
trying to hold the octopus secure in a bag full of holes....
....praying that another leg won't pop out.
