Tuesday, March 13, 2012

Raynaud's Cure?

Maybe or maybe not. That question can't be answered right now. Right now, I'd like to share where I've been and where I am now with Raynaud's and my health in general. Sharing not for sympathy, but with the hope that others can be helped through this. That's how I've mainly learned to deal with Raynaud's, by listening to others who have it via the internet. My hope is that someone out there can benefit from this story.

9 Years Ago
At the time, I was working as a motivational weight loss speaker. My job required me to dress to impress, no matter the weather. It was winter. I waited for a bus in below freezing weather wearing four inch heel boots with just nylons on under them. The bus was to take me to a part of a campus for the lecture, and this cold day it took forever. I remember not being able to get my feet warm again for hours that day, and when they did, my toes looked a purpley-black. I was sure I got frost bite. That's what I called it, because it needed a name.


Years Two And Three
When the weather turned cold in September, my toes would turn that same purpley-black, and wearing my normal shoes became painful. Yet, sweet vanity trudged on in the same just-for-looks shoes trying to keep the pain off my face. My feet were colder than cold, to the bone. A cold I really can't explain and it lasted until May each year. Three pairs of socks was the usual uniform. Nothing could make them warm. Trust me, I tried it ALL.


Years Four Through Six
This is where it started to get ugly. The colors went from purpley-black to near black...and then....open sores on my toes. Walking became a chore and was difficult. It started in September, and didn't heal until May. I gave up shoes and wore slippers most of the time or socks with sandals. This fashion girl had a big slice of humble pie on a regular basis. I finally decided to sell my boot and shoe collection that filled my closet on ebay. Why keep them? Although they were lovely to look at.

By this time I had been through three different doctors. Raynaud's Disease or Reynaud's Phenomena was the diagnosis. I need to mention how stubborn I am when it comes to medication. I'm not going to take prescription drugs if I can find a better way. The options were very limited with mainstream medical.


At least now it had a name. A name that evidently many people were familiar with because if the topic came up about my embarrassing looking shoes...or if I felt the need to explain them (that's just how I am), I could blame them on Mr. Raynaud's. Then, I'd hear, "cold hands and feet, huh". I would just smile and nod, because as I learned on the Raynaud's site, I happen to be in the .5 trillionth of the percent (not really, I just don't personally know anyone else) of people who are affected beyond just cold feet and hands. At this point, my hands and face were affected as well, but not as severely. My face and hands would turn super white like all the blood left them and my lips were blue during the 'bad' season.




Year Seven
Year seven brought along an interesting twist. It was fall and I had on the usual arsenal of socks and big cloggy looking slippers, when all of a sudden, my feet started to get warm. I pulled the socks off to see red-swollen feet. I thought Raynaud's was over! NO! This started the symptoms of Erythromelalgia. Yes, boys and girls, now warm bothers me as much as cold. Erythromelalgia, AKA, burning feet (for real).
Here is info from one site:

It is diagnosed when the extremities are red, warm and painful- the pain is often described as burning. This pain is only relieved by cooling (often in cold water) or the elevation of the affected extremities.
Great. Relieved by cooling. Which brings on the symptoms of Raynaud's...which, in order to save the toes from falling off, I need socks....which brings on the Erythromelalgia. You get the picture. Relief could be found in the months of July and August. Why? I can only guess because the temps are more even day and night?

Natural Doctor
Enter a lovely naturopathic doctor. We gave her a great big chunk of my husband's paychecks and in return, she was able to bring some relief. CoQ 100, major amounts of fish oil, c, d, e, f (I made that last one up), alpha lipoic acid, resveratrol, cayenne, ginkgo...more supplements than food is what I consumed everyday. But still, my brain wanted to go, and do, and run, and I felt compromised. I pushed myself constantly, only to be laid up for a period of time after. Lovely doctor was able to help me wear shoes again. Expensive ugly shoes, but shoes none the less.

By the way, I should mention that all these years I STILL have gone, and done and ran as you can read on this blog... I just move slower than most.

Summer 2011
The warm weather made the Burning Feet almost unbearable. Walking was out of the question. It's like having your feet on fire. Something had to give. I'd given up all the 'normal' stuff as far as food goes over the years trying to be healthier. Nearly everything my family consumes is homemade, and we DO NOT buy into the 'organic' processed foods. If we can't make it, we don't buy it. But there was one more card I was holding back that needed to go. It was Memorial Weekend, and I woke up in the middle of the night with one thought....COFFEE. The coffee needed to go and anyone with Raynaud's knows it. BUT, coffee. My beloved, warm, morning greeting. How could I break up a 20 year love affair with coffee? Just do it. And I did. And that's when everything got worse. You see, it seems that coffee, was holding my life together. No energy at all and a feeling of being run down and constantly sick set in permanently.

Winter of 2011
This winter has been relatively mild for our part of the country. Husband also installed a wood stove which gives the house a radiant feeling heat. Life was ok as long as I stayed in the bubble. Then, pneumonia from November until January. I know I'm not a spring chicken, but I'm not ready for a soup pot either. How could this be?

I called a doctor that had treated Daughter when she was a baby. He's a kinesiologist and naturopathic doctor. It takes an hour and a half to get there, but he's a smart guy and I figured my last hope before I resign myself to this is just the way things are.


He actually seemed concerned and not just data collecting. Tests were ordered for hair, blood and six hour urine tests. The results were; heavy metal contamination (most severe being lead, thallium, and nickel), low thyroid and adrenal function, hypoglycemic, and many other critical nutritional deficiencies, along with high auto immune markers. Really? The report has much more to say than that...doesn't seem like an easy fix, but God is in control.


Detox

So that brings me to today. The word 'detox' is a lovely little word, isn't it? It's where the movie stars go, isn't it? No, it's not. And it's not pretty. It's pretty ugly in fact, and downright painful. At least this detox is.

Five, fourteen day DMSA detox cycles (I'm currently in my second one), along with daily detox of the alimentary canal, and lots of other supporting supplements. It's the fourteen day detox cycles of DMSA that are killing me. Cover your eyes if your squeamish. Vomiting, headaches, high fever, liver pain (that's right, angry liver), sleeplessness, and muscle aches. Four out of the fourteen days are not so bad and I'm able to attend to daily duties somewhat. A good friend told me that on my good days I shouldn't be cleaning house, but man-o-man. I've just got to.

Prayer Requests
Please join me in prayer for my family during this time.

Daughter has instantly become the 'woman' of the house, (more on that hopefully tomorrow),and I pray that she'll not lose interest in her new job and that she'll be CAREFUL not to hurt herself. Husband's job has him working late most nights, so that puts her on her own A LOT.

Husband has a high stress job and then has to come home to this. Pray for him to easily meet the requirements of his job and be able to come home at a decent time.


Update
So how are things going right now? Today is day six of fourteen and I'm still in bed for most of the day, very weak after this last cycle, but at least I feel like turning the computer on today. Believe it or not, my feet look nearly normal most of the time! As you can see in the photo below, I have quality nurses checking on me constantly.
Follow along on the progress of this detox and my quest to end Raynaud's, subscribe or check back regularly.

8 comments:

  1. You and your family are in our prayers, let us know if you need anything.
    -Bek

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  2. Please don't hesitate to call if you need anything during the day from Linda or myself, we are right around the corner and available! Low on fresh eggs yet?

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  3. I am thrilled to get to see your blog! I am sending you positive thoughts during this difficult time. Please call or email me if you want to chat! Let's get together once you are feeling better!

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  4. Loring - thank you for your offer. I'll let you know, I'm due to start the next cycle Thursday and that's when it'll be tough again.

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  5. Hi Lisa! So good to hear from you. I miss you and love you. I'll contact you in early summer when this is all over....hopefully. Positive thoughts are appreciated, but prayers work a little better :)
    H

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  6. Wonderful post. This will def help someone! Thanks for being so honest. You can count on me to pray as you come to mind!

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  7. Am praying for you and your family! God is faithful. May you all feel His presence.

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