Day 10 of the WEGO Health Blog Challenge: A Letter to 16-yr-old Me (or, How To Handle Multiple Health Problems)

Posted: April 11, 2012 in Uncategorized
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The Challenge assignment for yesterday was to write a letter to our teenage self. I had a lot to say, so I am late in getting this out. Apologies…
This is a long one.
But, the things I need to share with teenage-Me will be quite helpful to others as well, so I decided to share it.
I fear that teenage-Me may tune old-Me out.
So, I have tried to make this interesting by being direct and emphasizing the important, so teenage-Me listens. Our life depends on it.

Hey Lori,
You’ve got some major health challenges coming up. It is important that you take charge of your health. This means being persistent with the health care providers about what you experience, how you feel, and what you know about your conditions. Paramount to your health – stick by that decision you made at 6 years old and DON’T have kids. In addition to our original reasons, think about this: would you pass on all this horrid medical stuff to a kid? Your life will be much richer and fuller because of this decision. Don’t let the the critics get to you!
Now some good news – you didn’t end up where social science and society predicted you’d land, and that is pretty darn awesome! You proved that destiny is personal choice, and not a product of your environment. So – IN YOUR FACE, all you people that blame their behavior on the neighborhood, alcoholic parents, or poverty! You proved that all the excuses are just that – excuses.
Yes, you will make mistakes through the years, but you will learn valuable lessons from them. Here’s what you need to know about your upcoming health challenges:
1. You should have gone to medical school! Why? You graduated high school at 16 – you have a natural curiosity and ability to teach yourself anything you find interesting that has enabled you to leave high school at age 16 and go on to college. Some of your ideas that you have NOW (in 1980) are similar to major “discoveries” that will be headlines in 20 years. It would be great to use your innate ability to conduct research to move these ideas ahead. But, we didn’t go to med school. Pell Grants didn’t pay for grad school. But we never gave up researching, investigating, searching.
2. Those strange headaches you have had since you were 12 – where you lose sensation on one side of your body – those are migraines. Stay current with emerging research on these cursed things. A sleep disorder you have had since you were a kid plays a major role in causation.(Delated Sleep Phase Disorder) will be identified in 1981, but acceptance of this as a diagnosis is slow in coming. Don’t take ANY of the 15 or more sleep meds doctors will persuade you to take to force you into a socially acceptable sleep schedule. The drugs, the behavior modification, the light box – they are all a waste of time and $$$ for your disorder (which is genetic, by the way). Acceptance is the most powerful tool you can use to live with this diagnosis. Interestingly, DSPD Is covered by the ADA – so find work that will accommodate you. (Too bad I just discovered this – in 2012…)
3. A blood test you get before you get married (at 18? Are you crazy?) show that something is wrong. Aunt Soph was right – you have an autoimmune disorder. When you were 11 (1974!), she told you and Mom that the problems you had every 2-3 months (so tired you couldn’t get up for school, the stomach pain, the sore and swollen joints) sounded just like the problems she developed as a teen. Tell your docs about ALL the health issues you have had (and that were ignored) since you were 5. Bring the books and any research with you to appointments. Make sure all of your sources are legitimate, and are not written by falsely-credentialed people or by someone peddling an “amazing new treatment.” Be persistent – the doctors don’t care much for patients telling them about emerging research or about things they haven’t read about first. Remind them you are just trying to help yourself be well.
4. Keep up with all of the nutritional research you — of weightlifting and personal training. The information you glean from Dr. Michael Colgan’s sports nutrition book (and his references) is decades ahead of its time. The supplements that will help your Raynaud’s syndrome (why you can’t always open the car door, why your hands ache when you go into an air-conditioned building, why grocery shopping hurts your hands and arms, why you can’t feel your toes and why the ends bleed, why you get chest pain, and why you can’t lift the weights you know you could if your fingers would just work properly): CoQ-10, essential fatty acids (EFAs), proanthocyanidins and cold-processed whey protein. Don’t stop taking them! Tell your rheumatologist – show him the Colgan book and your supplemental research. When he refers you to UCONN Medical Center for the Raynaud’s research study – bring it with you. And stay in the study. Don’t let someone talk you out of participating.
5. When your breasts start painfully growing (at age 30), and large lumpy masses grow in your armpits, don’t accept the “diagnosis” of “fibrocystic breasts.” What is happening to you is abnormal and is being caused by an imbalance of multiple hormones. Research the pituitary gland, and the cascade of hormones that cause breast development. Address this now so you can avoid the horrific pain, multiple surgeries and frustrations down the road. They underarm masses are actually breast tissue – the “axillary tail” of the breast, and they are NOT supposed to develop. Well, you WILL need those masses under your arms surgically removed – get a breast specialist to do the surgery and not a general surgeon. He will leave some of the material, and the masses will regrow. Your breasts will grow again, as if you were visited by the Puberty Fairy, this time causing extreme, deep, burning pain. The six doctors, surgeons and specialists you see will not be able to figure out what is causing this issue, and don’t pursue an answer, literally telling you there is nothing they can do for you. You figure it all out. It is a hormone imbalance again, triggered by some medication you have been on for years. This information is readily available in articles of all levels. It took 20 minutes of research (after I had some test results) to pinpoint the cause.
6. During the testing to find the cause of the breast pain, a benign tumor is found in your left breast.
7. Because of wonky hormone levels, a brain MRI was ordered. You have a pituitary tumor, that is benign. Some ” diffuse white matter changes” are also found. This is still a mystery.
8. The anemia you will be told you have is NOT iron-deficiency anemia. You simply have genetically small, but functioning and well-made red blood cells (microcytosis). Do not take the iron supplements they prescribe. The cause is probably related to your autoimmune disorder. You also have some blood clotting oddities (heterozygous Leiden Factor V and Protein S deficiency). This is good info to share with surgeons so you can receive prophylactic meds to prevent blood clots.
9. A car accident will completely alter the course of your life. Don’t be a guinea piq and volunteer for that FDA study for the disk replacement implants. You don’t need the surgery. Not that surgery anyway. You need to find a neurosurgeon that specializes in peripheral neuropathies. You have genetic anomaly – a split muscle and a bifurcated nerve – both of which are not supposed to be that way. Learn Pilates, with that in mind. It will get you through the pain until you find that neurosurgeon. More on the back pain issue later…

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