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A long journey


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Rockin Robin
12/19/2021
8:44:36 AM

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Dear Kanika,

It is so good to hear from you! So glad you feel up to getting out and about. Don't worry about the job, it will come when it's the right one. You sound happy and hopeful. To me, that is the right attitude! Always stay positive!

How very lovely your "Sinterklaas" tradition is, sounds like so much fun. I love the idea of the poems and jokes! I write poems frequently. We are gearing up for Christmas too! It is also beginning to get a little cool!

I live in Texas and the weather here is very different from where you live. It's been in the 70's & 80 here and that beats the 100's!!!

Loved hearing about your traditions, share more if you can!!

Hang in there dear friend! I am praying for you!

Love & Hugs,
Rockin Robin


Kanika
12/10/2021
9:52:57 AM

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Hi Everyone!

First of all, thank you to Chrissie and Robin for you ever so kind replies :-).
@ Robin: I really hope the issues you had to deal with are somewhat better. Having this disease is overwhelming in itself, let alone if other issues are added in the mix. I empathize.

@ Chrissie: I agree with your thoughtful reflections on the Managing Morgellons initiative. I think trying to heal from this disease is such a tremendous task that you need to be careful that you don't hinder that process by focusing too much on getting the disease acknowledged. Although I am always grateful when somebody is courageous enough to go public who represents this disease in a reasonable manner.

As far as my journey goes: I am still making progress and I feel very blessed. The highlight of the past weeks was that I had a job interview! I mainly applied to kind of practice with writing a letter and perhaps doing a job interview, and see how I would react to something like that again. I don't think I will get the job as the interview did not go as well as I would have liked, but I am just so grateful that I am able to even think about work again. It will probably take some time before I find something because I have a gap on my resume due to having Morgellons. But my former supervisors, professors at the university I was working at, have offered to help me with my job hunt. So maybe that will help somewhat :-).

Last week we also celebrated 'Sinterklaas', which is a Dutch tradition somewhat similar to Santa Claus. Children up til 6-7 years old believe there is a man with a long, white beard and a red hat (Sinterklaas) on a white horse, and all his helpers ('Pieten') who comes from Spain by boat each year to give children presents. He 'arrives' in Holland a few weeks prior to presents night ('pakjesavond'). During that time children put their shoes in front of the chimney at night and sing a song for Sinterklaas, and in the morning they receive a small gift. Which they believe Sinterklaas and his helpers put there. There is even a special tv show called the Sinterklaas news that many children watch during these weeks. And there is special Sinterklaas candy like chocolate letters and something called 'pepernoten', which are small round biscuits with allspice. And then on 5 December it is 'presents night'. Someone (usually a parent or neighbour) knocks on the door, throws candy inside and then there is a big burlap bag full of presents outside. The fun part of Sinterklaas is that many of the gifts are accompanied by poems. When it is a gift for someone other than a young child it is tradition to kind of make jokes and tease each other in these poems.

So last week, we celebrated Sinterklaas with my parents, my sister, my brother in law and my two nephews of 1,5 and 3,5. The eldest was so excited! We first did a round of gifts with the children and when they went to bed we did the rest of the poems and gifts for the adults. It was a lot of fun!

All in all, my energy levels have really increased in the past weeks. In the beginning I needed só much sleep just to be able to get up and walk around, and now I wake up at a reasonable hour without needing an alarm. My cognition has also continued to improve. The external, visible symptoms are still there and visible, but it is so much easier to deal with them when you feel more energetic and optimistic. And for me, my skin has always been somewhat of an issue, so that makes it a bit easier to deal with as well. I seem to be getting into a stage of a lot of exfoliating on my body and scalp, which kind of reminds me of how my skin used to be from when I was about 15. I do wonder if I didn't have some sort of pre-stage of Morgellons back then, because it looks so similar to what I remember it looked and felt like at that time (without the fibers).

I continue to feel hopeful and grateful and I really think 2022 will be the year in which I will be able to work again! Which is nothing short of a miracle to me, knowing how sick I was four years ago.

I hope everyone is doing as well as possible, taking steps towards healing and practicing kindness to themselves, as we all have been dealt quite a difficult card in life. There is hope and we can get well!

Kanika





Chrissie
12/9/2021
9:13:14 AM

Morgellons -

Dear Kanika,

It is great to hear your news about your health!!!

Lovely to hear your symptoms have improved a lot in the last six months, so much so that you have been able to socialize with friends :-). I know how important that was for you and how great it felt to be able to do it too!!!

It's great that the psychiatrist and also the Chinese herbalist both see MD as a real illness. Very interesting that the Chinese medical system sees it as a condition of Wei, causing atrophy . I have always really liked the Chinese medical way of thinking, I find it way much more holistic than conventional Western medicine that's for sure!!

It is admirable that the woman on you tube re, 'Managing Morgellons,' is trying to bring awareness of this disease and get help re the CDC. Personally I feel however, that the CDC will continue not to be helpful regards Morgellons. I don't know if we will be vindicated and fully acknowledged, or the proper research be undertaken re Morgellons in our lifetime. I do think there would need to be an awful lot more money and time and effort put into research than there has been. There's a huge cover up regards chronic Lyme itself, let alone Morgellons. So, that's why I really like the ethos of Mel's group,that we don't focus on exactly what this is in entirety , especially the weirdness. But we just focus on healing our bio terrain, regaining immunity and recovering our wellness:-).

Thanks for letting us know how you are doing and take good care of yourself!!

Chrissie



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