7 1/2 Things You Can DO at the Beginning.

For the most part, when you ask someone in the medical profession what you can do about your autoimmune condition they throw their arms up in the air.  The problem is there are so many autoimmune diseases and each day brings awareness of new ones.  There are no real answers on how to avoid them. Frankly, there is no one-size-fits-all solution on how to put them in remission either.  This is more disappointing with the realization that overtime; the chronic malfunctioning of our immune systems can lead to various cancers and more autoimmune issues.  It’s a vicious merry go round and you need to get off it!… But how? Heck it’s hard to even get to the bottom of some of your symptoms much less get the diagnosis of which autoimmune issue is at play. Here’s advice for dealing with doctors, symptoms, & illness.

 

Lack of Quality Care:

The average primary care doctor has about 15 minutes to spend with you. They rush through dozens of patients a day and barely have time for lunch much less research and development for the most frequently seen conditions. Long gone are the days in which doctors made house calls and sat with Grandma sipping tea in the kitchen learning about the family.  I once read that auto-immunity problems only began to get traction in the late 1950s early 1960s. So I suppose as a disease group it’s still young but I’m frustrated that other diseases have gotten more notice and traction for a cure. You hear a lot about cancer or heart disease but not autoimmune diseases and yet it affects so many Americans. It’s not a poor man’s disease either. It doesn’t care if you are infamous, famous or a regular Joe. There are affected famous people as well.   The American Ninja Warrior (Bull) suffers from the auto immune disease alopecia.  Montel Williams has admitted to battling multiple sclerosis.  Toni Braxton and Lady Gaga have lupus as does Nick Cannon. Jack Osbourne (Ozzy Osbourne’s son) has MS and Missy Elliott suffers from Graves ’ disease. These are just a few.  One of the challenges this disease group has is the lack of Drs. with autoimmunity specialty. Is this because autoimmune diseases are so difficult to deal with and treat? (Pardon me here; they say doctors have big egos. If that’s true why wouldn’t more advance into this area where cures and remission would have them seen as autoimmunity gods!)

Did you ever notice when you fill out a medical history form at the doctor’s office there’s rarely mention of autoimmune disease. Occasionally, you’ll get a question about your thyroid gland but it is infrequent to see questions about any autoimmune issues. Maybe they avoid the elephant in the room given the difficulty of understanding and treatment required. This is also what makes diagnosis difficult. For many people it takes years to be diagnosed with an autoimmune disease. Most doctors try to treat the symptoms in order to offer you relief without exploring the root cause. My first autoimmune disease took only months to diagnose however my second took years.  As I read that last line I now realize it shouldn’t have taken months for the 1^st autoimmune disease to be diagnosed!

OK, so you have persistent, UN-diagnosed symptoms or you just learned you have an autoimmune disease. You are at the beginning of this process.

 

WHAT YOU MUST DO:

 

1) Trust yourself.  My first recommendation is to trust your own instincts. If you’ve gone to a doctor thinking there something wrong but they didn’t find what was wrong, stop making them gods and / or minimizing your problem. The hitch is our expectations & assumptions. We treat doctors as if they know it all. We figure they are the experts and we write off our symptoms as stress or hormone adjustment after pregnancy, during menopause or in our seasoned years etc. We think this must be normal after _____ insert your situation. It can be experiencing a death, losing a job, a friends betrayal, a divorce etc. We suffer with appetite changes, weight changes, energy level drops, chronic pain, lost sex drive, or inability to sleep through the night and we just write ourselves off. Remember they call what doctors do as “practicing medicine”. It’s not a perfect gig or they’d call it curing illness.

2) Assess the possibilities. Get a better understanding into your inherited genetic tendencies, take into account your family history, your current health history, past injuries, toxin exposure (hair dyes, metals poisoning, chemical sensitivities etc.), any possible hidden infections (in body, teeth, old root canals, etc.), your diet, allergies, your environment etc.

3) Learn. Read about the most progressive and innovative alternative treatments for key autoimmune diseases (which can also be done from this blog). Understand how your diet and stress reduction techniques can completely cure or put into remission some cases of autoimmune issues.

4) Realize that you will get a lot of one-size-fits-all advice. It never applies to everyone equally. One person will tell you to go on this kind of diet, another will tell you forget the diet and do something else. Realize your factors may be different from somebody else. Try remedies. Try lots of things. Some may help a little some may help a lot and some may fall flat.

5) Time Efficient Communication with Doctors. Find a doctor who will listen to you but walk in prepared.  I walk in with a clearly stated goal for them as well as a spreadsheet.

The statement might be… “I’m still experiencing pain in my joints. I am looking to walk away from today’s appointment with next steps.” Give them a clear goal. Then you can show them your spreadsheet and share the things you have tried/ done so far.

The spreadsheet is one page (only) with 3 sections.

1. DX’s (diagnoses) ,
2. The list of tests run & results. This helps them from thumbing through countless records to play catch up & see what has been done thus far.
3. List of remedies, treatments, nutraceuticals and/ or drugs tried to treat your condition. Depending on how far along you are in this process this 3^rd section might be symptoms/ issues (in order of disturbance) instead.

The spreadsheet doesn’t have to be in this order but walking in with an “all in one place cheat sheet” for them is efficient. Most of the info is questions they will inevitably ask. If you are only going to have 10-15 minutes together, you want it to be productive & results oriented.

6) Pain Level. Be prepared to describe your pain level on a scale of 1-10. 1 being next to none and 10 is like having your arm ripped off. Doctors don’t like it when people say “its 14 on a scale of 1-10” they think you exaggerate and it causes them to take out their judgement ruler and use it against you. Be honest. Also, be prepared to share at what pain level you take meds.

Early on before I found natural remedies that would help me with the pain, my aching was so bad I said “I’m looking for something stronger & different then 800Mg of Motrin 3 times a day which only brings the pain down to a 7, does nothing for the muscle tightness and causes stomach upset.” While the Doctor looked at me with bug eyes, he realized how much pain I was in. I gave him exact quantities and frequency. Be specific & don’t embellish.

7) Stress level. Do not under estimate the power of stress.  All of us live with or know dysfunction & stress well. They can be bosses, coworkers, family members, the customer service rep at your cable company etc.  (I’ll have a whole blog post on this subject later because it’s that important.)  The problem with stress is that it stops the body’s natural self-repair and restoration mechanisms.  Chronic stress is a killer – literally.

There was a 18 month period in my life which consisted of my losing a job, the death of a marriage (or what I thought it was or could be), a custody battle, child protective services (which made the custody battle easier but still a stressful time), countless attorney & investigator calls, the woman’s shelter, and the death of two family members who were like parents to me.  There were the normal stressors too, like ‘back to school’ events, swim team meets, bills, and all the other household, pet, car and child care responsibilities.  What do you think this did to my body? And, do you think I took care of myself at the time? The answer is no and I paid the price dearly.

Your life doesn’t have to be back to back drama or stress-ors to trigger health issues but if it does… take notice immediately. Take corrective action ASAP. It’s not really the stress itself but rather how it affects you that causes the problem. As you read my list, you may think it large but I know people with bigger problems who seem less stressed. There are parents whose children are addicted to heroin, parents on death beds, women struggling with breast cancer, people getting divorced, people string new businesses, etc.

Stress has many repercussions in the body. It causes the ‘fight or flight’ response which is adrenaline with nor-epinephrine flowing through our veins.  Adrenaline is what gives you that burst of energy. It’s released in after our body sends the message from our brain that danger is near. Nor-epinephrine is what gives you the ability to respond quickly. It’s released by the adrenal glands.  The hypothalamus engages and releases corticotrophin- releasing hormones which tell the pituitary gland to release (ACTH) adrenocorticotropic hormone which is what causes the cortisol response in the body.

This served our ancestors well as they had to fight off animals that preyed on us as food but in today’s life style our saber tooth tigers can be the traffic on the way to work, another bill or a relationship. The problem is our body doesn’t rate the stressor on a scale of 1-10 and put a leveler on its response.  Our bodies can remain in the domino effect of that stress response for 6 hours to days.  When this happens the natural restorative state never kicks back in. Imagine running your car engine without ever giving it more oil, tune ups or maintenance of any kind.

CHRONIC STRESS LESSENS YOUR BODY’S ABILITY TO REPAIR

Whether it’s a cold, daily stress or a flare-up of a chronic condition, stress causes bodily chaos. It can cause weight gain, higher blood pressure and more serious conditions like autoimmune in which your body just gets so confused it starts attacking itself. It’s kind of like sleep deprivation.  When you don’t get enough rest our bodies don’t function properly. Cognitive & emotional responses are negatively affected.  People have been known to become disoriented. They can get lost on a familiar route or even hallucinate. They are likely to struggle with delirium.  Well, imagine this is what happens to your immune system under chronic stress. Is it any wonder our immune system gets a bit confused and starts seeing things that aren’t enemies as a threat!?

So, deal with stress. Understand you must, must, must:

• Laugh. It is curative. Remove the negativity from your FB feed. You don’t have to unfriend those people but you can remove them from your feed. Fill your mind with funnies and cute things. I love to see photos or video of cute animals doing funny things. These always give me the warm fuzzies. What does it for you?
• Commit to self-comfort & nurturing. What comforts you – besides macaroni and cheese or shopping? Make sure you do, have and experience that weekly. It might be daily Epson salt baths, a stuffed animal, warm milk & cumin before bed, a conversation with your favorite aunt, smudging your environment, burning incense. whatever it is, make sure you engage in those activities regularly.
• Add “play” into your week. What do you love to do and haven’t done enough of lately? Do that. What did you love to do as a kid? Roller skate, color, play with Spirograph, swim, play with dolls or stuffed animal, a pet or play on a swing or slide.
• Eliminate your stressors. Make a list of all causes of stress in your life. Think of everything, being a care taker, having to mow the yard, clean the house, never getting alone or down time, whatever it is…. And go through each of these items asking yourself “If I had a free pass and no one thought badly of me… which would I eliminate?” and then find a way to do that. Yes I know exactly how hard it is. I had to do the same (but that story is for another blog entry)
• Rest! This means do nothing… you know even God took a day of rest.. that’s good guidance! Meditate, nap in the hammock, fall asleep while being rocked and gazing at the sky. Get some sunshine (vitamin D which is really good for autoimmune suffers). do things without rushing. My favorite thing to do on a rest day is to sleep on a boat. The swaying is simply a divine feeling to me. If that’s not your gig, find out what is and do that. Be a human BEing instead of a human DOing.
• Don’t sweat the small stuff. Seriously, decide if stressing over your dirty floor is worth a life time of sickness. Decide what things to simply ‘let go’ worrying over. People who attend your funeral aren’t going to rave about your clean floors! In fact they will probably say “she was OCD and neurotic about those damn floors instead of spending time with us.” Don’t give them a chance to out that on your epitaph!
• Focus on gratitude. When you are struggling it is sometimes hard to get out of the mind loop. Force yourself to focus on what there is to be grateful for. Focus on the good, the pretty, and the easy. It can be the beautiful weather, the bird that landed in front of you, the apple pie you smell, your loving dog, your kid’s cleaned (or attempted) to clean the kitchen, this blog 🙂 Start with finding 5 things every morning and find 5 things to acknowledge right before you go to sleep too. I had to remind myself of this often. I went so far as to get Phil 4:8 tattooed on my arm to help me remember. Do whatever it takes – even when its hard.

When you don’t get better (after doing the above) and by following your doctor’s advice, it’s time to step up your game. You will need to explore item no. 2 in greater detail: the toxins you are exposed to, infections, allergies, food intake and more to see what works to stop your triggers. We will talk about all those things.

Unfortunately, if you are like me and didn’t heed the warning signs at the beginning, you may be dealing with more than one thing and we will have to work hard to get your body to calm down. It’s not impossible by any stretch (although at times it may feel daunting) It does, however, require patience, persistence and being open to trying various methods to help your body heal.

It wasn’t that long ago that I couldn’t put my underwear on, load the dishwasher, do laundry or other simple tasks without intense and paralyzing pain. Getting ready to go out & have dinner with friends was a monumental task. It took hours to get ready and was exhausting. It required caffeine to pump me up and pain medications to be able to move. Then, sitting with those friends and pretending to not be in pain was excruciating!  I began hating life. Gone were my daily work outs, weekend hikes or dog walks. Life was sucking pretty bad. Now life is one amazing journey again and I love it.

You can get there too!

 

September 7, 2016

Comments are closed.