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View Full Version : Either SLE/auto-inflammatory & training a service/assistance dog!



lyssa_
05-08-2012, 09:25 PM
This is my first post here just to introduce myself a bit. My story is similar to the story of many other people here. I am 30 years old and I've been sick for nearly four years. At first they had no idea what was going on - they thought it was something to do with my GI tract somewhere as I had a lot of abdominal pain, and I spent many months in hospital. Eventually I got a funny rash and they did some autoimmune blood tests and I had the highest ANA results many of the doctors had ever seen, so I was referred to a new specialist.

With him I got a tentative diagnosis of SLE, and started many new meds. However, I didn't respond to steroids much at all, and even IV steroid pulse therapy didn't stop some rather unpleasant rashes, plus one of my blood test results is atypical of SLE... so my specialist began to doubt the diagnosis. The specialist suspects now that I either have 'atypical' SLE or a very rare 'auto-inflammatory' disease (different from autoimmune), one of the genetic ones, although I have tested negative for two so far. It is very frustrating not having a clear diagnosis, as I am sure many of you know. My joint and abdominal pain is a little better now I have a good pain regimen, and while at my sickest I was in a wheelchair for a while, now I only use double crutches most of the time. I haven't spent any significant time in hospital for over a year, so using that as a measure, I am certainly doing better. I also have chronic migraines and headaches, although that has been around for 12 years.

One good thing has happened though, and that is my dog. I am training a Golden Retriever (now 9 months old) as a service/assistance dog (we call them Assistance dogs in Australia, in North America they are Service dogs) to help me physically - pick up things I drop, pick up my crutches, handbag etc. He wears a harness-vest which has a handle to help give me some forward momentum so that I can walk longer distances without getting exhausted (he can't do much of that until he is older and his joints have finished growing). He is at the beginning of his advanced training and will be able to do much more for me in the future. This is just the start of my journey with him, but he is a true joy, and has made a huge difference in the quality of my life. If any of you are interested, I keep a blog about my journey with him, and this blog post (http://downunderassistancedog.blogspot.com.au/2012/04/can-people-with-lupus-and-other.html) is about whether having lupus (or similar) means you can have a service/assistance dog and what my dog Knightley does for me and this blog post is an older one with a bit more about my diagnosis (http://downunderassistancedog.blogspot.com.au/2011/08/lupus-sle-spoon-theory-and-assistance.html) (before there was any doubt). My main blog page is http://downunderassistancedog.blogspot.com, and I have a sister facebook page (https://www.facebook.com/DownunderAssistanceDog) I post small training updates to as well. We do a LOT of training! For those who are quite severely effected by their illness, I do recommend looking into a service/assistance dog. My blog gets a lot of Google hits from people wanting to know more!

I may have a new big challenge in my life coming up as my GP says if I want to have children I really need to start trying soon. She says one of her other patients in a similar situation to me recently has had one successfully... but I can't imagine my normal daily pain with pregnancy on top.... I also have fertility problems, so I am starting to run out of time if we run into problems conceiving. I have an appointment coming up at the hospital with the high risk natal unit, which will do a lot of investigation and help plan my prospective pregnancy in every detail. Part of me thinks I am not meant to have children though! Anyone else out there in a similar situation, or been through it? Apparently a good deal of my medication will need to change. I also worry I would get through pregnancy and then wouldn't have the energy to take care of a baby.....

Anyway, it's good to be among people who can understand the daily battle.

Lyssa

steve.b
05-08-2012, 11:33 PM
hi lyssa, and welcome.
we have a few other members who are at different stages of pregnancy.
i hope you manage to work things out, fertility wise.

i am glad your service dog training is so successful.
it is a long slow road, but sounds very rewarding.

n.mac
05-09-2012, 06:35 PM
I too am atempting to train 2 service dogs.
My niece rescued a dog from the side of a busy road after someone had hit her and just kept going.
After nursing her back to health the dog gave birth to 10 puppies.
And I got 2. they are pit/ lab mix and weigh in at about 100 lbs.ea.

So far after 15 months I have sucessfully trained them to take long naps on my couch (when my bed is not available of course)
bark loudly to announce stray cats or rabbits in my yard
eat absolutly everything that is not nailed down including my wife's(and only my wife's) shoes.

lyssa_
05-09-2012, 06:54 PM
So far after 15 months I have sucessfully trained them to take long naps on my couch (when my bed is not available of course)
bark loudly to announce stray cats or rabbits in my yard
eat absolutly everything that is not nailed down including my wife's(and only my wife's) shoes.

Wow, that's pretty advanced training! They sound rather large. My boy is just about 32kg (70lbs) but he has a little more growing to do. I wanted a male because they tend to be bigger and heavier set, and I need that for the extra pulling momentum when walking. You wouldn't have a problem with your 100lbs monsters if you wanted to try it!

lyssa_
05-09-2012, 06:58 PM
we have a few other members who are at different stages of pregnancy.
i hope you manage to work things out, fertility wise.


Well, that will be interesting reading for me then... I am rather terrified at the prospect but at the same time want it badly.

steve.b
05-09-2012, 09:49 PM
I too am atempting to train 2 service dogs.....


it sounds like you are at there service lol

magistramarla
05-12-2012, 10:07 PM
Hi Lyssa,
Welcome to WHL. I'm late to reading this because I've been down and out with a migraine headache for a bit.
I have Mixed Connective Tissue Disease and I'm going to be checked for Spastic Paraplegia, so I have some severe mobility problems.
My daughter is a dog trainer, and she trained my German Shepherd, Conner, to be my service dog.
He goes everywhere with me, and we're having a wonderful time together.

Meg taught him to stiffen when I say "hold". I have lots of problems on curbs and stairs, so it's great to be able to lean on him.
He even will come and stiffen to help me out of the bathtub when my hubby isn't home to help.
I know what you mean about the pulling momentum. Conner is a great counter-balance for me when I lose my balance when walking.
He also pulls me up inclines. I sometimes use a wheelchair when we travel or just for having Jeff to push me around the mall.
Conner thinks that it is his duty to "help" Jeff by lending his strength and pulling.

Conner is a big, strong boy - 100 lbs and 5 years old. I've attached a picture of us at a wine tasting event in March. He's also been asked to be the spokesdog for a group called The Institute for Canine Studies. The group is working to raise money to build a facility in this area to train service and therapy dogs. We attended a fundraising event at the famous Pebble Beach Golf Club, and we've been invited to speak at a luncheon in October for the Federally Employed Women's Group. Conner enjoys all the attention he gets.

Have you seen the books on self-training service dogs written for people with disabilities? They are called Teamwork I and II.
Here's the link for them - http://www.topdogusa.org/ My daughter already knew most of the techniques, but those books have been very handy for me.

I'm glad that you've joined us - we can have fun exchanging dog stories.
Hugs,
Marla

magistramarla
05-12-2012, 10:32 PM
Hey Lyssa,
I just saw your beautiful blog and the pictures of your sweet boy, Knightly.
Meg had no problems getting Conner certified here in the US. He has an ID card that is carried on his "jacket".
He has no problems with manners in public. We can take him with us to a fancy restaurant, and he will snooze under the table. When we stand up, it often surprises people at the tables near us - they never knew that there was a big dog near them.
I've even flown with him. I sat in the bulkhead seat and he snoozed at my feet for the entire flight.

We do have some of the same problems that you are having. Conner is a super-friendly dog and wants to be friends with every dog he sees. Meg had originally trained him to be her demo-dog at Petco, and it was his job to make friends with other dogs. I'm having a hard time getting him to walk past other dogs without stopping to sniff. We've attended some training classes at Petsmart, and I try to re-enforce what we learned there.

Check out those books that I mentioned. They might help you, too.
Hugs,
Marla