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(@luminous)
Famed Member
Joined: 6 years ago
Posts: 398
 

@lovendures @ghandigirl

Thank you for your supportive kind words.
 
Fortunately I do have a supportive family. My friends deserted me because they got fed up of me being ill and not moving forward in life like them. 
 
I've had DNA tests done, mainly because of my rare platelet dysfunction. They put me in a research database. My sister has it too, but milder. She doesn't have anything else wrong with her though. 
 
I sent my brain MRIs to a top neuroradiologist in Texas because I wasn't getting answers in the UK where I live. He did a full report which revealed so much more tha  anyone else has done so far. It isnt a official diagnosis but the findings could lead to a diagnosis and treatment. So I took his report to a neurologist who agreed with the findings and proposed a treatment plan for me. But now this is in question because ever since the pandemic happened, he has now A.) Forgot who I am. B.) Not written down proper notes from our appointment when we last met. C.) Our healthcare system is overwhelmed causing huge delays to clinics and telephone appointments along with huge waiting lists for treatment. So I'm trying to rectify A and B so he carries out the agreed and proposed treatment plan, when it is safe to do so. But telephoning his secretary and emailing him the medical documents over and over so he remembers is growing tiresome. Now I'm questioning whether I'm on the right path at all, and this is happening because it's blocked and not the right path.
 
Throughout this 12 year journey, I will say communication has been one of the biggest hurdles for me. People not listening, complacency, ignorance, arrogance, mistakes, lost medical documents and records. It's been a nightmare. I find it hard to get people to listen and understand me. It has made me bitter and angry which I hate feeling because I know I should try to forgive and move on, but its hard when I forgive and it continues and goes on and on.  
 
Apologies for my rant. It's frustrating.


   
Unk p, ghandigirl, Lovendures and 13 people reacted
(@jeanne-mayell)
Illustrious Member
Joined: 10 years ago
Posts: 7308
 

I heard from Coyote.  He wanted me to tell you this:

"I want to let the community know that I am healing from surgery and my balance is improving. I am especially grateful for all of the healing intentions the group sent. They're giving me a lot of equanimity in this turbulent time. I'm going through a transition period where I need to conserve my mental and vital life energy, and that's why I'm not posting."

So do keep sending your healing prayers. They work! 



   
GradualGoddess, Unk p, ghandigirl and 29 people reacted
(@journeywithme2)
Illustrious Member
Joined: 6 years ago
Posts: 1925
 

@coyote  ??❤️?????❤️??



   
Iridium, Unk p, TriciaCT and 9 people reacted
(@journeywithme2)
Illustrious Member
Joined: 6 years ago
Posts: 1925
 

@saibh  ???????



   
Unk p, TriciaCT, deetoo and 5 people reacted
(@cindy)
Famed Member
Joined: 9 years ago
Posts: 533
 

Haven't had the chance to check in for a while. Sending prayers to those in need. I'm happy for those who have had prayers answered. My heart goes out to those out who have suffered loss, pain or setbacks.

My son had covid and Monday was his last day of quarantine. His coworker had it, thus making it mandatory for all in the office to be tested. My kid was thankfully asymptomatic the whole time.

@luminous, I'm sorry for your troubles. I understand the frustrations of not being able to get an accurate diagnosis. My family has issues in that area. We don't react to medicines as most do (& docs have issues when we say don't give our relative this medicine, or make suggestions on what ro use instead). When my sister died 3 years ago, dad asked me to choose a charity for people to send donations to instead of flowers. I chose NORD. (National Organization for Rare Diseases) The support group for one of the rare diseases my sister had joined this group instead of remaining freestanding. You are not alone, much as it may seem that way at times. While reading your post I kept hearing spirit saying "water". I have no clue why-maybe to remind you to stay hydrated properly until you are properly diagnosed? I just know it was made clear to me to relay the "message." I'll apologize in advance if it perplexes you as much as it has me. 



   
Unk p, Luminous, TriciaCT and 9 people reacted
(@moonbeam)
Famed Member
Joined: 6 years ago
Posts: 458
 

@luminous share with us. We will stick by you, no matter which illness you have. I realize it is frustrating and frighting not to know what is wrong however. Have you thought about looking for answers in other states? Cities or even countries? I know you said you've seen everybody, but sometimes there is one little corner of the world ones missed. There must be an expert somewhere who knows what's going on?

Stay strong, don't lose yourself to hate and hold onto those you love. I'm with you in spirit. ❤️ 

 

@jewels So happy for you and your friends;-)

 

@saibh will keep sending light and feather-light hugs.

 

@ghandigirl, still thinking of you as well. Hope you're holding on, even if it is by the fingernails.



   
Unk p, Luminous, lowtide and 9 people reacted
(@luminous)
Famed Member
Joined: 6 years ago
Posts: 398
 

@cindy

Thank you for your kind words. 

I have used NORD before for a few other problems with my health. Unfortunately these are just other existing problems and are not directly causing the main issues at hand. But I am very grateful NORD exists, because many doctors are lacking in knowledge in many rare types of illness.

I don't know what they are telling you about water, but I suspect hydration is probably correct. I notice that those in spirit haven't wanted to tell me what this illness is, only make me aware of various issues that are on a need-to-know basis. I guess part of my journey is to discover what it is and get it treated and that is the challenge. I know only as much as being told that I will be healed and restored and it will be figured out. But it's 12 years and it feels like it going nowhere. So I begin to doubt whether that's even true when I am still struggling.

@moonbeam 

You are very kind, thank you. I would love to share, but often I feel too scared to share because I feel vulnerable about being open. People are so quick to judge. They get a small impression of you and think they have you figured out. So many peope have done that. It gets too painful. It causes me to lose faith in people and then I feel idiotic for being open and honest. 

I currently live in the UK. I have travelled all over the UK to different hospitals and specialists with lots different opinions and different results. At the moment, I'm trying to keep to one doctor who has said they will help me, but the pandemic has complicated this because our healthcare system is overwhelmed by COVID-19. I can't go elsewhere because of the pandemic and the restrictions not to mention the risks. I also can't really travel to another country for the same reasons and also because I am on total parenteral nutrition which massively complicates going anywhere outside the UK.

I know I'm not alone. I know many here and elsewhere have their own health battles and journeys, and I try to remind myself of that everyday and for all the help, kindness, and support I receive.



   
Unk p, Moonbeam, ghandigirl and 3 people reacted
(@ana)
Illustrious Member
Joined: 6 years ago
Posts: 1041
 

@luminous   I wish for you to find the answers you seek.  ? 



   
deetoo, Unk p, Luminous and 3 people reacted
(@ghandigirl)
Illustrious Member
Joined: 8 years ago
Posts: 1103
 

@moonbeam

Thank you. I've been a bit run down but I am on the mend, and again looking for the good. One thing I can say about me, I am still basically an optimist and I never stay down for long. Friendship here, and in my real life where I am so richly blessed, has been a comfort and an inspiration. 

 



   
deetoo, Unk p, Moonbeam and 3 people reacted
(@triciact)
Illustrious Member
Joined: 8 years ago
Posts: 1146
 

@luminous

My heart goes out to you and what you are going through. Not having answers and a treatment for something like this is so frustrating. Many times they diagnose, only later to find out that what they treated someone for was not the correct disease or treatment. This has happened to family members of mine too, but what you have is very perplexing. I'll be saying prayers and sending you much love and light.

I also wonder, have you ever tried NAET? Not even sure it's in your area but thought I would mention it helped me with many things western medicine did not. (please google NAET for info).

???



   
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