[MaryU]

Hi JennAp,

Thanks for your response and am responding back with some info that may help you.

1) AF is not diagnosed by standard conventional testing. There are different methods, but the most common is a Saliva kit which is more sensitive in measuring cortisol levels (blood work only detects severe ranges of cortisol – extremely low/high – which then leads to medical diagnosis and treatment of illnesses like Cushings disease and Adrenal Insufficiency. The results from the Saliva kit shows your levels on a graph. I cried when I saw mine as the am level was so bad it wasn’t even on the chart! After some time, I got another test done – it revealed marked improvement, thanks to my naturapath.

2) OHIP – lots to say here. You have to be really sick in most cases to get tests other than standard ones (taken seriously enough, I am presuming based on my experience), as well as to be recommended to a specialist; further, you have to be proven sick in some cases for paid tests (one of my conditions I had to pay for the initial blood test and when proven I indeed had a recognized health concern, my tests became free courtesy of OHIP). OHIP is not like it used to be.

3) Practicing medical supports – I too looked at Naturapathic doctors, but too expensive… I was at my wits end watching my health deteriorate. Then I found out the Canadian College of Naturapathic Medicine (CCNM). I don’t know where you live but there is one in Toronto, ON. The prices are really great and affordable; students and low income receive additional discounts. Further, appts are one hour in length dedicated to your treatment pathway. It has been a godsend for me.
Prior to, I looked at the two-tiered medical centers (where you pay a fee to part of it) but it was super expensive. Recently, I learned of Integrative Practitioners and/or Functional Medicine Practitioners, but they’re expensive too! There is a OHIP rebate of $80 as a patient of some of these services, but not all. The rebate appears to be a one time thing from what I have discerned and been told regarding package pricing.
I so hear you about financial difficulties/loss and other losses, etc. It is not easy!
I am glad that you have somewhere to go during this time.

Hope this information helps
MaryU

ps I also have a chronic illness that took four years to diagnosis (Endometriosis) as after failing different tests, I was told it was in my head. It wasn’t until the point of almost daily excruciating pain and finding a competent doctor that I was offered help (treatment and surgery) within one appointment. Invisible illness are the worst! I hope you can find some help in your area!

[MaryU]

HI Annabel,

I have tried to find AF people in my area – even happened to stumble upon email addresses (through other forums) – however, no one responds. I don’t know why exactly, except I was dialoguing with this inspirational woman who has other conditions (unrecognized in the past like AF is now) who shed some insight.

After she was no longer bed-ridden, and by the way no longer able to work, she began a support group. BUT it took lots of time and effort to find people, and then more to get things going. This was basically like her job, and fortunate for her she didn’t need an income. It is still going 24 years later, only because she has had some help. Sadly though, she is getting older and looking for someone to take over but no one is stepping up. One day she will have to stop because of age, on top of her health. Though her story is inspirational, I do not have the time and energy to do that extra mile on top of what is already on my plate.

I was part of an chronic illness support group once (I also have endometriosis) but it was a one time six week group, that was supposed to meet once in awhile; but after the first reunion, stopped. There was no explanation. It was a government funded and run program.

I am educated myself, but doesn’t mean others will or want to understand. If they can’t “see” it then it is hard for them to believe. People with AF or like conditions don’t “look sick”. I have lost friends etc because of this condition because some people want a solid explanation, doctor’s back up (a “real” doctor – not a ND, etc etc), and so on. Its a tough road.

MaryU
PS I am having great difficulty with this site – not being able to sign on, having to rechange my password – which doesn’t always work, and not getting notification that there has been a reply. Thought you might want to know. Best

[MaryU]

Hi Teesh,

Generally, I think this whole AF thing can make one feel depressed with all we have to go through. I personally try to stay away from meds unless it is a must.

Regarding my own healing journey, I was also told to do the protein in the morning thing and cut out the caffeine. Other things in addition to this was to:

1) Go to bed a a decent hour – 10pm – 10:30pm and sleep in a dark place with a wake up time of 9am or thereafter. I was told rest is important for the adrenals especially during the early hours, hence why sleeping in until at least nine is beneficial. I did the sleeping in thing for awhile – almost regularly like this for about a year – and it really worked.

2) I took adrenal supplements for a while and then came off (as per dr’s directions)

3) No strenuous exercise, etc. There are energy giving/building exercises, like chi gong/qigong and tai chi, that give you energy rather than it requiring and taking away like most western exercises do ie the gym. Some stretches are also good. When ready, I also went for very short walks -what I could handle – and then built up to 45 minutes a day.

4) Surround yourself with positives – as much as you can – which can include:
a) being in a stress-free/non-toxic people environment
b) having a quiet relaxing space you can go to- inside and/or outdoors
c) doing things that promote/focus on your healing and well-being
d) engaging with supportive people who themselves have a good sense of health and well-being

5) Seek out a medical practitioner that supports the journey and knows how to treat AF. I went the naturalpath direction, with a traditional dr who was supportive along the way.

Best on your recovery
MaryU

[MaryU]

Hi bouchardony,
I can totally relate to your plight! Before I was diagnosed, I gained ten pounds, and then ten pounds more. Once diagnosed, another 10 pounds. I recently lost some weight, due to a healthier lifestyle.

Like you, I was in good physical shape and love going to the gym! Cardio and weight training. I also enjoy playing sports and other physical activities. I realized how bad the fatigue was when I couldn’t even do a round of volleyball, dreading coming off the bench for the next rotation. Thank goodness for rotations, was all I could think. I stopped playing volleyball. I had to quit everything. But still went to the gym exercising at my own pace.

However, when diagnosed I was told to not engage in exercise (I was also experiencing dizziness) and focus on rest. Though frustrated, seeing my results – bringing tears to my eyes – made me stop. After 1 1/2 years, I was finally okayed to go back to the gym to do treadmill. I started at 2 minutes. I am now up to 45 minute walks. Next came very light weights. I no longer push exercise on myself to lose weight, but do what my body can.

The biggest thing I had to do was love myself – all 30 extra pounds of me. Stressing about weight was another stress I couldn’t afford. I met a man during this time, who expressed the beauty he saw and tells me on a regular basis. To find such love… Note, he is very fit – a nutritionist, personal trainer, and weight trained since he was 16. This guy will never want to date me (because of my weight), I thought. I was wrong. Not able to exercise when we met, I eventually began to lose some weight — I stopped weighing myself but went down a size. Any kind of stress is not a friend to our bodies.

Yes, being patient is what I do. But maybe, what if, I never lose weight. I face this reality, even though I hope one day to be the size I desire. That voice gets quieter as I realize I am lovable me, regardless of size. The other thing I did was adhere to the wisdom of drs to not push myself – it makes AF symptoms worse. So these are the things I do: 1) love myself, 2) surround myself with healthy supportive caring people – quality, not quantity, matters, 3) eat healthy, and 4) listen to my body for proper rest and exercise.

Hope this helps!
Best
MaryU

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