While planning my wedding, very similar health issues started to manifest again. And again, stress was too blame. After I got married, and the symptoms didn't go away, I pushed for some better answers. I went through several doctors, a TON of tests and even MORE misdiagnosis' before I found a doctor who really pushed through. After a year of medical prodding, I received my diagnosis. My husband took one look at the ANA (anti-nuclear antibody) blood result and bought into my diagnosis immediately.
Me on the other hand- well let's put it this way, my husband thinks I have just recently bought into my diagnosis. I guess some might call that denial, but too be honest, it just seemed really big and really vague and REALLY NOT ME. When I was diagnosed, there was actually a life expectancy for people with lupus of 30 years, which means from diagnosis to death a person could expect to live 30 years!! UMM-people died from lupus! Several big names were in the news, one actors wife who had nearly died during child birth and one young actors' sister who died suddenly from kidney failure due to lupus.
I actually did pretty well with my health with the exception of pregnancy for most of my early days. I was medicated, but not heavily. My pregnancy's were carefully monitored, I had a "team" of doctors rather than one doctor and I spent a lot of time on bed rest for my first five kiddo's, trying desperately to keep them cooking for as long as absolutely possible. Can I just add that I learned a lot at this time about me, my life and how I wanted to live each day to the fullest!!
About 10 years ago (I can't believe it has been that long), I started in on some pretty intense flare up symptoms. The flare came really from out of no where and came on with a vengeance. I did everything I was asked, took all the medicine that I was prescribed ,got rest, tried to manage my stress levels but no matter what we did, I was in a full on downward spiral.
I have been a stay at home mom for most of our marriage. At this time it was a good thing, because there is no way I could have continued working. NON AT ALL! I could barely function as it was. At the time, a lot of what I was experiencing wasn't on the list of lupus symptoms, so again I went through a lot of testing to see if I had a sister disease or if I had some other type of auto immune disease on top of the lupus.
I was frustrated.
And I was mildly scared!
My own mom had passed away very young. She was only 29. I was young when she died. Non of this made for a good combination for someone who was supposed to keep her stress down.
Finally, I found an amazing combination of doctors. I had a leading doctor in lupus working with me. She had actually quit seeing patients full time to do research and teach other doctors how to best diagnose and treat lupus patients. I was so grateful for her wisdom. And even more grateful for her candor. There were times that she had to talk with me with down right harshness as I tried to push myself to limits that were actually causing my health to flare. It wasn't until I had been seeing her for several years and we had really experimented with every kind of medicine available to me that I finally started to accept my diagnosis. As lupus was getting more understood in the medical world, it was making more sense to me. I spent many years on the highest doses of Imuran (a chemotherapy pill) allowed for my weight and a dose of Plaquenil that was actually higher than allowed for my weight. In addition I had several other prescriptions. For quite a while, I was taking over 20 pills a day.
And I became convinced that although I didn't know why, when I exercised, I felt not only better, but miraculously better. I discovered yoga and was AMAZED at what that did for my health and my wellness.
Many, many times I went for a follow up visit, and she would remind me that for where my numbers were, I should be requiring the use of a cane or other aids for comfort. I would scream from the rooftops if I could that exercise does wonders for health issues such as lupus.
Every time my doctor and I attempted to lower my dosages,
or change my medication,
I didn't do well, so I got to a point where my doctor was just happy to have me in a medically induced remission. I wasn't so content, but every time I brought up a time line for getting off the meds, she would gently (or not so gently) remind me that I was in this for life. I would be on this course of meds for the rest of my life, but for now I needed to be happy with my quality of life as it was.
With this cocktail of Rx's and exercise, I managed life for quite some time.
And than I moved!
And I had to find a new doctor!
And I realized I didn't like my course of health treatment.
And I didn't like that I was having as many symptoms from side effects of medication than I had actual lupus symptoms.
AND I really wanted to try something new.
So I found a medical doctor who would support a homeopathic combination to my treatment.
I found her actually by accident. I went to her for a health need that I figured was more related to my age & my gender than my lupus.
After our initial consultation, she said that she could treat the one issue or she could treat my health as a whole. She explained the pros and cons. Everything she said resonated with every fiber of my being. I decided it was worth a try.
At this point, she actually allowed me to stay on my medications, but started me on an aggressive food management change. I started a diet cleanse and noticed improvements immediately. I struggled a little with her plans because I don't like to follow diet and health trends. At this time it seemed that being lactose intolerant, gluten intolerant or any other myriad of food sensitivity was taking on a trendy trajectory and I was feeling a little gun shy. But I couldn't deny that I FELT better.
After a year of trying to manage my food intake and dramatically changing how my family eats, we noticed some definite health related benefits. Not just my own, but each member of my family had some ailment reprieve. But when my doctor did a follow up blood test, my lupus markers were through the roof! She suggested a very aggressive plan--
"Just get off of all the medication."
Oh my goodness,"Are You Serious"
It felt risky,
and my husband doubted it big time!
And after the first week, Rx free, I was begging for reprieve.
I was sick,
and immobile,
and sick,
and in pain....
but I kept going.
And now here I am, almost a year later,
and I am medication free.
But I am not symptom free,
and I HAVE to know when to say when,
and I have to monitor my food intake
(sometimes, I hate that part,
because I really love things like this!)
But I feel like I've learned so much about my body,
my health,
and how to care for myself.
I have to really monitor my schedule,
I have to plan for rests if I have a big project I have been working on
and I have to EAT WELL
and EXERCISE and
ACCEPT my limitations.
I used to push myself out there with Buzz Lightyear-
to Infinity & Beyond was my motto.
Now I follow the advice of The Robinson's
and I just keep moving forward,
and anything in the forward direction,
I consider a success.
It has been a long process, this crazy path to health and wellness,
I'm still not perfect at it,
I just really like this kind of stuff
(did I already say that?????)
and I have an addiction that sends me to the kitchen to create such delectable dreaminess,
but I'm trying,
and I'm learning,
and I am managing my health without synthetic chemical creations
(not that I am against them, I think they have their place)
and I have hope that I haven't had in years.
If you find yourself on this path,
good luck,
I'm thinking of you and praying you'll find your own health path,
and I sympathize with your pain,
and your worries,
and your fears,
and I know you will find peace and a blessing,
in your own diagnosis,
just look for it,
because it is there!
