Adult suvivors of Rhesus Haemolytic Disease

Tai chi is ace I do a blend of tai chi and yoga, this really helps to focus on mindfulness, thinking about air as it flows over leaves of trees across the surface of the ocean- ruffling the feathers of roosting birds.

I play wind instruments to assist in diaphraphmatic breathing this also calms me and focusing on the tune I’m attempting.

I attempt to eat nutrition based foods - however I’m a snack food junkie and graze from the fridge if I can.

Medication is 54mg methylphenidate hydrochloride brand name concerta xl really sorts the harshest parts of innatentive and impulsive adhd. Still hyper active but I like that bit. If it’s too much I go for a run.

In the past I experienced use ing weed. (Gulp...) and I’m afraid to say in very small . Can’t stress that enough.. very small amounts gave some relief. The problem is if using any .ANY drug it really must be under guidelines of a dr not a dealer. This is v.important.

As a people pleaser, it’s not right to try and please the dealer..!!!

Dr yes street NO.

And coffee. Oh I live coffee. Real coffee never instant.

Espresso or latte. 

Foods that are good. 

I can eat and crave raw leafy greens Brussels to kale.

Steak, eggs etc 

I do a mean scrambled egg with avocado and kale mmmm yum.

Marmite is an amazing product.

And a spoon of  honey every day.

Strawberries give a nice energy boost.

Re sleeping, when u eat turkey or iceberg lettuce, as digestion occurs sleep hormones are created, eaten in evening gives a bit more than glass of milk.

Cheese with the tyrosine crystals are good mood stims.

Not sure about chocolate.

Seems to be tiring to consume no matter how tasty it is.

Almonds and dates, when eaten in the Morning release awake hormones that can prop up the circadian rhythm. Love an early night. Hate waking two hours later feeling like I’ve had 8 hrs..!!

And last but not least. Laughing laughing laughing. Loud and fun.

The ability to laugh at ones self or a good comedian, enhances any household. Even at low moments laughter can help immeasurably.

Best wishes

B+

To the last three letters, Bonnieblue, Douglas, Barry

I know exactly what you mean about a never ending struggle and feeling 'different'.  We must certainly be fighters however and it is so comforting to know that you are not alone in this unrecognised predicament.

Geraldine

Hello Barry,

I have a weakened diaphragm so excessive talking (Which I can definitely do!) is discouraged.  However, I've been learning under a Doctor of Bio Chemistry the importance of moving our Lymphatic System and one of the primary ways that is done is by moving our bodies and deep breathing.  I was intrigued by what you wrote of using wind instruments to help you focus on diaphragmatic breathing.  Question:  What is the easiest wind instrument to play?  (For someone who has never played)  

Thank you Barry.  I look forward to hearing back from you.

Sorry to be vague, but it’s really a personal choice.

Some like bagpipes others don’t!!

Sorry if that’s not much help.

Best wishes

B+

Were you also born Rh Incompatible?  How is your health today?

Hello Bonnieblue

A boy baby born before me died at seven months and another after me at five days old.  They were my mothers 5th & 7th children.  I was born with severe jaundice and very weak - this was just before blood changes started.  Somehow I managed to survive .  The seventh boy died under his blood change.  Many health issues breast cancer at 47, hysterectomy, gall bladder removal, digestive problems, but by far the worse anxiety & depression.  I always suspected the rh thing could contribute to this but until joining this discussion wasn't sure.  Now it seems that I was right but it is so frustrating that doctor's do not latch on to this.  I thought it strange too that although I am rh positive, as are my two sons, they both had jaundice when they were born despite being late arrivers - the last one had to be induced - what an experience that was!  But as I can see from the other comments despite it all we are survivors and fighters. Good luck and best wishes to all

Geraldine

Hello Geraldine,  

Thank you for your reply.  It seems doctors don't have much information to share with us because our birth conditions really do seem to have been forgotten, once the "antidote" was invented.  

I'm glad we've all found each other to share in our journey.  

Today. Feeling so desperate I know the only thing to bring fairness and stability to my loved ones is to go and not return.

I know it’s not real but the thought is strong.

So I went to make some pasta.

Ahh only one egg.

Solution cycle to shop.

Cycle pace= flat out.

Returned calmer and thoughts abated.

Before medication I wasn’t being my authentic self always trying to cover my hyper active loony side. With little or no success.

Now meds and psycho help I am reborn..? But this takes a lot of getting used to.

Your loved ones want you to stay.

Pushing them away, blame destruction of good feelings so “they” are at fault is not being authentic to your true self.

A great person told me be more like Spock.

If it’s negative or not real don’t give it time. Time is precious.

My mum lives with guilt..!

Why. I’ve no idea.

My parents loved each other and created a family of survivors.

I don’t want her to feel guilty for my life. 

I wish for all to have happier times.

Why didn’t I end it before now ?

Cos I didn’t want to.

Why is it hard to cope at times. 

Cos that’s life.

No ones fault.

Think of Monty python and what hAve the Romans ever done for me....?

Hyper arousal is where a thought process gathers speed and we look for patterns.

Even filling in gaps to make it a full thought.

Eg we can see faces in inanimate objects like plug sockets or what ever. Clouds forming into pics. 

It’s how the brain works.

People make decisions, like not telling you for a multitude of reasons. Each person is entitled to their own opinions. Wether we as non neuro typicals like or not.

Can be to care or save hurt.

How can a man and women that love each other tell their kids they aren’t compatible?

Some days are tough some are easy. Some crush some are ice cream.

Imagine not having the abilities that you have.

On a low time this would seem a relief. On a good day. Who would be without the strengths we have.

I’m learning and each day is new.

I blame myself.

I shall stop doing so soon I hope.

Do I like myself ? I think so. 

There is definitely room for improvement.

Tonight’s pasta, well yummy.

Tomorrow, we’ll have to wait and see. I hope it’s ice cream.

Love to all.

No offence meant. 

We all have labels.

Everything does. Wether it always matters or only sometimes matters, defines the ice cream.

B+

Oh Barry,  Ice Cream and Pizza have just been put on my 'Off Limits" list.  Now you have me thinking of them.  ;-)  

As I have stated I too am a Rhesus baby ( no. 2), I was very jaundiced and dying for the first 5 days of my life, then came the transfusion and I survived. My mother and I did not have a good relationship all my life - there was an anger, animosity and resentment that seemed to come from her that has never gone away. I have had many attempts at ending it but came to understand that I did not want to die - I just did not know how to live. There have been many problems that I thought were normal for everyone - very bright but struggled at school, very low energy and bouts of paralysis and being unable to move. I was diagnosed with Asperger Syndrome by Prof Atwood and that has helped with understanding who I was but in 2001 I started having attacks that sent my nervous system a little crazy, my muscles from my chest to my abdo would twist and contract from hours to days, with severe vomiting, sweating and salivating and would end up with my liver affected ( a lot like labor pains but in the chest and abdomen not stop).

The Doctors at the ER never found the problem but I started to see a Neurologist and he told me that there are metabolic diseases that are still to be found and maybe one day I will have the answers. Never did I ever think that the Rhesus has anything to do with my life but now am seeing otherwise. He told me I also had some form of Dystonia. I think you have to find your passion in this world in order to want to stay in it - I have always loved motorbikes and I finally learnt to ride from my Son. I find that it gives me a freedom to leave it all behind and just enjoy the moment and I too want to find a block of land away from everyone and have a couple of sheds on it and live what is left of my time in peace and solitude and pick MY times with the masses. If too long on my bike the muscles of my leg start to twist from my knee to my hip but a Valium stops this.

I too wondered if I should have died at birth and the life I have lived was somehow squeezed in and really was no place for me.

I left an article from a New Zealand study regarding the transfusions and the damage done to us before birth and the study states that we should have had more transfusions for about 3-4 months after birth as the damage continues for a while after.

I hope all of you find the answers that you are looking for and have some good health.

Sharon

Hi Sharon

Is there a link to that NZ study? My sister born March 49 is the first rh baby in NZ/Australasia to live. Many transfusions during the first 6 months of her life. She wasn't even given a middle christian name as she wasn't expected to live. 

I am the only sibling but between me and her there were a few (3 or 4) miscarriages. I never linked my autoimmune problems to my rh sister until I found this forum, in fact I always thought I had dodged a bullet but maybe not so. I have been afflicted with sinusitis since I was 13, psoriasis @34, psoriatic arthritis @45 and rheumatoid arthritis  @ about 60. I have had a lot of success making life livable by living in a warm climate (Sub Tropics) a diet of my own making with input from a Naturopath and more recently a dietitian  

I also have sinuses problems and found the only thing that works  is  sovereign silver. I get the spray bottle for the nostrils, unscrew the top, take the little hose off and spray four times in each nostril while I am bent over. This allows the liquid run down into my sinuses. Burns a little but I have been doing it for about 4-5 months with pretty good result. What child are you? And how is your sister doing?

Doug

Hi Sharon, A lot of us have damaged relationship with our mothers; resentment, denial, neglect and in some cases even abuse. I don’t think we ever had a chance to bond with our mothers. The guilt our mother must have felt must have been tremendous. While many babies where developing a bond with their mothers we were isolated and given those freaken ET and to boot many of us where ugly ducklings at birth. I mean who wants to hug an ugly baby. I didn’t develop a relationship with my mom until she was dying from cancer. She down loaded a lot of stuff to me when she was dying and one of the things was the guilt she harbored for so many years.

Thank God for the RhoGAM®.

Hi Douglas

I am the oldest by 3 & 1/2 years and there is only two of us.

I don't see my sister much because we live in different countries but I think she is doing fine, at least she says she is.

I should have mentioned my sinus problems have 95% cleared up. Firstly in the 70's I quit smoking then in 2001 I started taking Transfer Factor a product that boosts the immune system. I took TF until about 2012. The sinusitis only occurs on rare occasions these days and when it does it doesn't last long and only blocks one nostril. TF also helped with other niggles I was susceptible too, especially the flu which I would get at least once a year which always set the sinusitis off. I have had the flu once since 2001 but I still get a cold on occasions.