View Full Version : Hi, I'm from New Zealand
05-13-2007, 04:04 PM
A year ago I was diagnosed with Lupus (SLE). It came about just three months after my youngest three kids (then aged 4, 7, & 11) were diagnosed with Aspergers Syndrome (a high functioning form of autism), and months after all of us were diagnosed with Ehlers Danlos Syndrome. What a hellish year plus.
I have been a single mum for seven years now, after walking from an emotionally abusive marriage of 13 years. I am not working, after dealing with the kids health problems for many years (severe gastric reflux), and now the fatigue and joint pain. Also finding help for the kids has been impossible, as in someone to assist me. The health system sucks. Well parts of it does. It is exhausting caring for the kids alone. My fight is nearly all gone. Love is a lost thought, unless by some miracle my knight in shining armour appears through my door, after living a quiet life, seldom going out, and never in the evenings.
I guess living with this condition, I have eliminated the takers from my life, those who don't respect my living situation, I have to be hands on all the time for the kids, for their safety. And because physically I can't give any more. But the problem is, there is no-one left. I find life to be very lonely. My family wiped their hands of me when I walked from my marriage, and did the unthinkable of having a child out of my marriage with a complete stranger, he did not want our son so no longer has anything to do with us. My phone seldom rings, never a friend, I get no visitors. The loneliness sucks, but at the end of the day I can rest when my body calls for it. It is a blessing and a curse all.
I have had to totally re-evatuate my whole treatment plan, after getting liver test results back after a glitch where they were being left out, most counts were very high. I have found my body allows medications to build up to a toxic level. I have had to eliminate codeine, and anti-inflammatories from my treatment plan, leaving panadol for fevers only. I use manuka honey in my morning cuppa, vitamin C, vitamin B, a multivitamin, and also iron tabs. I shall be trying Bee Pollen within the next month, as I am very prone to flu's and colds. In the past I have had great difficulty fighting them off, and often getting sinus and chest infections requiring antibiotics. Something which I have not required for a while now, for a change.
I am 40 now, but I apparently have had the condition since a teenager, you won't believe the different things it was misdiagnosed as lol.
I frequently wonder what my future holds. I do hope to work from home in the future, small steps.
Peace, Love and Happiness
05-13-2007, 04:19 PM
On a post note:
I have also looked at removing artificial preservatives, colourings and flavourings from mine and my kids diets. And most recently have started using organic foods after knowing of the sprays used on food crops, sheep etc, having lived on farms in the past. Organics food tastes heaps better than normal store bought, so I hope to grow a lot of my own foods in the next year or two.
I am simply trying to make things on my body a lot easier to handle, so aiming for remission, or who knows what may come about from these changes.
05-13-2007, 08:29 PM
Hello Hippy-Chic :lol:
Welcome to our family. Most of us, like you, have come to realize that we suffered from this disease for many years prior to being diagnosed. Looking back on our symptoms, we can now make some sense out of the many aches and pains that we suffered. Also, like you, many of us have had to eliminate persons in our lives whom we found to be toxic to us. It does lead to lonliness, especially when our friends and family abandon us because they do not agree with our choices. Having Lupus makes one feel isolated and alone just by virtue of the disease itself. To have to deal with the loss of a supportive family or supportive friends is quite a burden.
I commend you for the strength that you have demonstrated and for your devotion to your children and their well being. That alone says so much about you and you should be very proud of yourself for doing what you are doing.
I am sorry to hear that health care in New Zealand is as crappy as health care in America. It is so expensive and HMO's are more like money making businesses than health providers! You are very smart to realize that you must re-evaluate your treatment plan and make necessary changes in your treatment and your lifestyle that will hopefully get you on the road to some form of remission. One of the common symptoms of Lupus is the frequency of infections, particularly viral infections which can lead to sinus infections (my own personal nemisis) as well as flu. You are not alone in this area at all.
You will find that everyone here is understanding, informative, supportive and more than willing to offer you comfort whenever you need it. I hope that you join us often and I hope that you will find some of what you need here to help you eliminate some of your lonliness! We are here for you and you are not alone!!
Peace and Blessings
05-14-2007, 07:31 AM
Dear Hippy-chic, I am sorry you are dealing with such an incredibly difficult situation. My great-niece is autistic and I know it's difficult to provide care and supervision for one autistic child - I can't imagine how much more complex it would be with three - especially with the added complication of EDS. Has your doctor told you which type of EDS runs in your family? There are several foundations and online support groups for EDS patients where you might be able to connect with other EDS families. They might be able to offer some tips for protecting the skin and joints. Does the health care system in NZ provide for any type of respite care - someone to help with the children so you can rest or have a break from the stress? And are there any support groups in your area for mothers of autistic children? Sometimes they are the most knowledgeable about navigating the system to get the specialized care autistic children need. And if you can enlist the services of a social worker or a health care advocate, they can also be a great resource.
Unfortunately, as your doctors have probably told you, the EDS will make managing the lupus more difficult, because some medications like steroids may be contraindicated, depending on which form of EDS you have. So it's really important for your geneticist and your rheumatologist to work together to develop a treatment plan for you.
You must feel terribly alone and discouraged right now. Even though none of us can be there for you physically, you have a "family" here who will always understand your fears and concerns, accept you with love and respect, and do our best to help however we can, even if it's only a prayer and a cyberhug.
05-15-2007, 01:49 AM
Welcome to the Forum! :D I am SO glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I am SO sorry that you are going through such a hard time at the moment :cry:, but please know that you are in my prayers! I am sending you an enormous cyber hug!
I am sixteen years old and I have Asperger's Syndrome too. It must be very difficult to try and cope with three Aspies! I am only one person and I know that my Asperger's and my health problems make things very difficult for my mom (who is a single mother; my parents are divorced). For example, I am badly Obsessive-Compulsive and I have severe Sensory Processing Disorder. I won't wear most clothes; I do not like being touched; I detest loud noises and groan excessively when I hear them; I won't eat foods with certain textures and will NEVER eat two different kinds of food if they are touching each other; I only understand the facial expressions 'sad', 'happy' and 'angry'; I do not understand jokes; most people in my grade simply walk away from me whenever I start talking, etc., etc. Do any of your three children have Epilepsy?
Keep well and God bless! :)
05-15-2007, 03:46 AM
In reply to MARYCAIN
Hi, thanks for your welcome, in reply to
Has your doctor told you which type of EDS runs in your family? Myself and all my kids (5 kids all up) have type 3, hypermobile type. For us it means lax joints, and gastric reflux. Sore joints correlating with the Lupus for me, such as today I went to the dentist, after being there for half an hour with my jaw being pryed open the jaw become so sore, it was collapsing, I shall now have something like three plus days of it flaring till it settles. But taking anti-inflammatories drives the gastric reflux crazy.
Does the health care system in NZ provide for any type of respite care - someone to help with the children so you can rest or have a break from the stress? And are there any support groups in your area for mothers of autistic children? Sometimes they are the most knowledgeable about navigating the system to get the specialized care autistic children need. And if you can enlist the services of a social worker or a health care advocate, they can also be a great resource. Well I have a needs accessor, through whom I have been granted 15 days carer support, it pays for a carer to care for the kids. With not having friends or family to assist, I have to look for outside help. But the glitch there is the government department which issues the carer support form so I can claim, keeps mucking up and the forms never reach me, apparently this is a common problem. This week I aim to ring again, and ask for someone higher up, I do get sick of fighting. I have sought contact with the local autism support group, the lady plans gatherings very rarely, which are evening meals at a local indoor playground, these happen once every seven months, and so far I have missed two because I have been crook at the time. it does make it hard. I was thinking of seeing if I can set up coffee meetings. It certainly is not easy, why life has to be a challenge, but it must be the plan for me.
05-15-2007, 04:05 AM
In reply to IloveHistory
Thanks for the cyber hugs. Actually yesterday I was in total tears, what made them worse was getting my liver test results, which were climbing again becasue I have been using panadol to knock back fever due to a virus. I pray that they drop down within the next month.
It must be very difficult to try and cope with three Aspies! Um heck yeah. I have one who makes ongoing noises, one who hates many noises, one who requires his food at luke worm temperature, also hates squishy footwear and scratchy clothes. We face many sensory issues lol. Yes I totally understand the lacking facial gestures. But we have a lot of fun regardless. In fact I would be bored if I had normal children, my lot are a joy. It is hard for others to understand the way an Aspie ticks. But you are unique, so though you face prejudice, think of all the great Aspie successors. My 12 year old Aspie refers to himself as Einstains prodigy lol. My three aspies have different dads, so it appears the asperger's is from me. Maybe it explains why I am a solitary person, why things are hard to grasp, who knows. My greatest challenge is my kids keep organising my house for me, and I can never find things lol.
Do any of your three children have Epilepsy?No, none. I do understand that it is not an easy condition to control.
05-15-2007, 05:12 AM
:lol: My mother has exactly the same problem! I keep tidying everything up and then she can't find anything! :lol: What really annoys me though, is that my mom keeps leaving the telephone lying skew on the desk and it drives me CRAZY! The telephone has to line up EXACTLY with the desk! Why does no-one else get the importance of this? At school, my books always have to be aligned by their spines at 90 degree angles and it gives my classmates great joy to knock my books skew after I have so carefully aligned them! :x Also, if you hang anything up in my cupboard, I will have an absolute fit because no-one ever gets anything in the right place! Once, I came back from a school camp to find out that my mother had re-arranged some of the things in my room and I totally lost it! I groaned for ages and then wouldn't speak to anyone for days...
Thanks very much! :D
Yes, you're right, it can be difficult to control! The worst part though, is that the side-effects of anti-Epileptic drugs are TERRIBLE! The one which I am currently on is making my hair fall out! :x :cry:
Keep well! :)