Saturday, July 31, 2010
Friday, July 30, 2010
Here I am about to set off for Thailand again..I must be nuts, I have Lupus, Heart Disease, and diffculty keeping my balance at the best of times..
Travel Insurance - Check..suprisingly enough Travel Insurance Direct were more concerned with my heart problems than my Lupus, whereas I was concerned for any Lupus Nasties my Little Butterfly might throw me!!
However Insurance is bought and paid for, and the only thing they won't cover is my recently broken wrist. I have gone up an age group since last time...grrr...so a higher premium of $150. However it was still cheaper than RACQ. I did declare all my Lupus-y things..neuropathy, RA etc.
Packing - check. Took as little as possible, 9. 5kg....but had heaps of carryon in my backpack as all my drugs have to be carried in personal luggage, along with a letter from my doctor siating pharmaceutical names for same and confirming they are required for my own use. Note to Lupies....Steroids are a prohibited import so you WILL need this letter.. You must carry your drugs in their original boxes and packaging so it's quite bulky.
Check anywhere you travel for vaccinations required and the Malaria Risk!!!! Bangkok and Chiang Mai are in protection category 4 which means cover up after sunset and use repellant. Those of yuo already on anti malarials are laughing. We carried a small pump spray of Off and a roll-on of Aerogard everywhere. Also check the travel advisories and register with Dept of Foreign Affairs before you go.
11 hours to Bangkok, then a 1 hour stopover before getting to Chiang Mai. I am taking my own soft fillled peanut neck pillow. Blow up ones suck majorly!!!! On top of everything else it is not so much more to stuff in the backpack and means I also have the airline pillow to help make me more comfortable. I put the plane pillow in the small of my back or under my feet. Always, always travel with at least a dozen packs of travel tissues,
Pack all toiletries in suitcases in Ziploc Bags too..saved my butt on many occasions..especially when the Betadine leaked!!! For first aid I take Betadine liquid, 6 bandaids, small roll of adhesive cloth tape, a 5 pack of gauze swabs and a pack of Zergic..great for sinus and sneezes. I also take a half foil of Lomotil , and a genereric Analgesic/calmative. AND Hand Wash.............of the waterless variety. If you need more than that you need a DOCTOR!!!!!!
Don't bother with shampoo, etc, buy it there ...7/11's are everywhere and your first port of calll when you arrive anyway to buy munchies and alcohol..Its fun trying to work out whats what..Hint Hint DOVE produsts all look the same in Thailand.
Impresssions of Thailand..happy people who are content with their lot on the whole. No crime that I saw, an incredible ability to utilise every available space. Also very clean, both the people and the country. They recycle or reuse SOOOOOOOO much. Beautiful food, fruit, and it is safe to eat at the market stalls, if the Thais are eating there you should too. EVERYONE eats out ...all the time.
I never saw an unaccompanied child or young teen. Even the poorest of people are friendly and outgoing. Not as many people living on the street or as many beggars as I had expected. The power lines are SCARY. Like metal spaghetti everywhere.
Northern Thailand is hot and dry, and although it is jungle it is not the lush green you expect. However it is still stunningly beautiful and I loved it.
I didn't get Thai Tummy because I watched the amount of fibre I ate, had only lightly spiced dishes (mostly), small sized portions and this trip DID NOT drink young coconut juice......I had it every day last trip..big mistake..LOL
My Beautiful Butterfly behaved splendidly, and allthough I was tired, and really punished my feet and legs with walking (still paying those multiple Spoons back - my feet are swollen, sore and my calves are very very painful) I will do it again. But maybe we will hire a scooter next time..LOL
Here is some artwork Annie has done as well!
Jolt-of-Java: " I love the light because it shows me the way...Yet I endure the darkness, because it shows me the stars...And remember the best way out...is always through..."-An adaption from Og Mandino & Robert Frost
Thursday, July 29, 2010
Wednesday, July 28, 2010
My World with a mother who has lupus
Hi My Name is Hannah Patricia Jones ,
I am 8 years old and I have a lot of love in my heart because I have a mom that is sick with Lupus and some other Illness , I am sure if my mom did not have lupus I would still have a lot of love in my heart anyway because I am a child of god and my mom has taught me that no matter what comes in life to always hold onto your faith.
I do not know what it would be like to have a mommy who is healthy and I would love to see her get well soon and I pray a lot for that to happen , but there is no cure for what my mom has right now and it really makes me sad and unhappy at times.
I worry all the time that when my mommy goes into the hospital that she may never come home to me and my baby sister Gabbriella , I worry that when she wakes up she is going to be in so much pain and I have to help her the best way I can.
I worry that if I catch a cold in school and get sick that my mom is going to catch it and it could hurt her so much , I worry that me and my sister may loose my mom to lupus anytime or any day.
My mom says I have too many worries for such a young child and it breaks her heart , sometimes we cry together and just hold each other and make it all better, I wish that I could kiss my mommy and make it all better like when I am hurt or sick she kisses me and makes me feel warm and happy inside , you see she makes it all better and never gives up on us ever.
My mom is a great educator , she includes me in on so much and it helps me in some ways but scares me in others.
Her lessons on lupus can be frightening but she is very honest with me about how she feels and when it is a good day or a bad day , and what Lupus is.
I have a Nona and Pap Pap that are always here in our home starting in the morning after my daddy leaves for work that help my mom , but sometimes I have to be the big sister and take care of Gabbriella because mommy is just not strong enough to lift her and play with her the way my sister wants to be played with.
I never mind doing this because this is how my life is with having a sick mommy.
I have met a great pal named Kimberly and she has a blog and it has helped me and my mommy so much because we read things about lupus that make us laugh and not cry , we talk about the lessons we learn from her blog , you see my pal Kim has Lupus too.
My mom is in a group a few of them and it helps her get through the days and nights when she is not able to sleep at all , and I have learned that their are other Mommy's just like my mom and they probably have the same feelings that my mom has and this helps her so much , and it helps me to know that I am not alone and my mom is just like the other moms , she is sick but full of love, so you see my mom is like the other moms , but she is just like the other sick mommy's.
We can not go out in the hot sun and we have to take breaks through the day and I am OK with all of this because I love my mom forever.
My mom is a fun mom even though she is sick , we do arts and crafts and we read books and snuggle and we eat lots of yummy treats too and watch a lot of great movies and cartoons.
My mom loves me and my sister very much and though she is not in my school as a PTA mom or a basketball coach for my team she makes up for it in so many different ways , I have learned to love books and I am a wizard on the computer and I am always making something or drawing something and learning something new everyday.
My mom is a great teacher. That is what I want to grow up to be.
I love to play on my wii game system and I love playing with my baby dolls and my doll house , my imagination is very large because I am not outside all the time and running around the park like other kids my age , but it does not bother me , you see my mom is sick and this is all I know and it is not sad for me because my life is a good life , but I still wish my mom was all better , it would be nice to see her as the well Mommy's.
I have gotten involved in raising money for the LFA and the Butterfly Gala in New York in September , I did a walk in my neighborhood and raised money , and my mommy and I made $5.00 donation butterfly pins to give out to the big donors.
I have raised $75.00 on my walk and have gotten people to donate on Kim's blog for the education and awareness of Lupus and most important to help find a cure.
Reading Kim's blog made me want to donate my earnings I get for helping in the house and that is how this all became a big wish for me , to help other sick Mommy's and even daddy's that have this illness.
I am having a lemon-aid stand this weekend and it is called Lemon-aid for lupus , I want to keep raising money , I want Kim to go to the gala in a beautiful purple gown and have her represent all of the people sick with my moms illness.
I want more people to know that lupus is real and that it does not always have a happy ending and that more people need to know this.
I am a fighter just like my mom , you see I have aspergers syndrome it is called by my mom little professors syndrome because I am very smart and witty aspergers is a form of autism and you know what ? my mom found this out about me when I was 3 years old and right away started getting me all the help I needed so that I can be the smart little person I am today. My Mom is a fighter.
My mom never gave up on me and I will never give up on my mom ever.
Lupus does a lot of things to families , it can break them apart and cause fights , it can break a spirit and cause tears , it can break your heart and that can happen at anytime.
My family has been through a lot with my mom being sick , my mom says she will never ever apologize for being sick to an adult , because adults should know better , but she is always apologizing to me and my sister and I just want to say it is OK mom and we love you just the way god made you.
I don't need to go outside everyday and I don't need my mom to chase me in the yard or to play basketball with me to show me she loves me , cause I just know she does no matter what.
My mom and dad took us to Disney World in April , it was so hard on her but she did it and we had such a great time , it took a lot of spoons out of her , and the spoons are what we use in our home as helpers to see how mom is doing through the day , right now she is helping me write this and she is using a spoon , and she only wakes up with 12 spoons a day and has to use them very wisely you see , so Disney was a boat load of spoons and my mommy gave them all away for me and my sister , on the 4th of July my mommy took us to Kennywood Amusement Park and got very sick from doing that , she was up all night and still made sure we went to Kennywood , we stayed from open until close and my mommy was sick for a week after just one day with us out in the sun and walking around the whole day through.
These are things that show me that my mom loves me and my sister no matter what , she sacrifices herself for our happiness when she could just have stayed home and we could have done sparklers , NO my mom took us to Celebrate America at Kennywood and she did it out of unconditional love.
These are just a few reasons why I love my mom so much and how life is when you have a mommy sick with lupus , I don't know if this will help another kid like me , but I sure hope it does.
I would not trade my life for any other life because I love who I am because I love my Mom and because my mom made me who I am today.
I will be going into 3rd grade this year and I will not have my mom as a classroom mom , but what I will have is a note tucked into my lunchbox that says I love you Hannah have a great day mommy misses you , and that is enough for me.
If anyone ever has any questions in there minds about someone with lupus , they need to know that Love , Faith and Hope are what makes a person with lupus keep on being the great person they are.
I will keep praying for a cure and I will keep praying for all of you ,I will keep on fighting for you , God is Good that's what my mom teaches me and so I will stop on that note.
This is what it is like to have a mommy so sick and on a ton of medications and that gives herself fully along with her spoons everyday to me and my baby sister Gabbriella , Thank You Kim for listening to me and understanding what it is to be a child with a Mother who has Lupus.
All My Love xoxoxoxo
Hannah Patricia Jones
I wasn't kidding when I said a box of Kleenex was strongly suggested...I hope that this piece of writing moved all of you the way that it truly moved me...And that you have been inspired by Hannah's words (it is hard not to be, wouldn't you agree?). Sometimes looking at the world through the eyes of a child ( a very smart, wise and intelligent one!) helps us to have clarity and a deeper and more meaningful understanding... I will leave you with our Page of Hope, Nothing is Kim Possible, our tickets and tables info for the Gala for anyone interested in attending/ corporate sponsorship (pull down menu for committee members select Kimberly Lehanka) and of course, our daily Jolt-of-Java:
Tuesday, July 27, 2010
Monday, July 26, 2010
After another night sleeping (please, I do not even think what I did would count as "sleeping" maybe more like tossing and turning around in every which way is more suited for what I did, but for our purposes, "sleeping" will do) on the big (recliner-like)chair downstairs, I seem to be feeling a bit better than yesterday, but about the same as the day prior. The pain in my chest has calmed down a bit and it is nice to have a little bit of relief there... it seems to be more coming and going, than constant (hey, I'll take it!), and the pain deep in my left lung is still there, annoying me with every breath (like it just did as I was typing that sentence, as if it was saying, "don't forget about me!"), but does seem to have improved a bit too (assuming I do not move to quick, take a deep breath, and/or twist the wrong way (every way is the wrong way). Nonetheless, I will give the doc a call and check in with my Lupologist to ensure everything is A-okay! So, if you could not tell by now, I have a slight case of the Mondays, after a long and uncomfortable weekend, I suppose it was inevitable...But with my Cup-O-Joe by my side and the Monday edition of The CHRONICLYsILLy Times...Wait!... You don't know what that is? It's only the most acclaimed Newspaper in all of Lupie-Land, with all of the latest and greatest cutting edge happenings from all over the globe! I must share it with you, I'd be doing you an injustice if I didn't...(and to give you an idea of just how popular it is, Let's just say that The New York Times has got nothing on The CHRONICLYsILLy Times...Yes, it's that big of a deal!) And what better way to share my all time favorite Newspaper with you (all the Droopy Lupies at the CHRONICLYsILLy Candy Factory read it daily as well(see older post, "CHRONICLYsILLy Candy Factory!)), than to post the entire "Fun & Games Section" for all of you to enjoy!