Gotta Love It

'Gotta love it' - the sarcastic name of the photo album on my Facebook page containing all the photos of Jessica's allergies, hospital stays etc. Well, not quite all, MRSA got two albums all of its own! There is one other too, 'The Not So Pretty'. I was only prompted to share those kinds of photos with my Facebook friends when a dear friend from Anaphalaxis Talk was having MRSA trouble with her own child.

Is it wrong to tell you how fed up I am with our lot in life? Of course. You're supposed to be all smiley and when someone asks how you are the polite answer is "well thanks, and you?". If you told them you feel like you have the weight of the world on your shoulders and the kid is sick and you just want to go to bed and never get out they'd probably have you committed!

I feel like that a lot. Completely overwhelmed and unimpressed with everything. Sometimes I have to remind myself that something that just happened was good, be happy, be grateful. I had a long phone call with my sister yesterday which put me in a real funk and I couldn't even concentrate on a DVD last night. She's getting married in 2011 and was asking me if I could replicate some invites she'd seen. Well, I haven't seen them so who knows? (I'm actually thinking the "gift card holder" my Cricut can make, pictured with a tulip printed paper a few posts ago would be nice, but in her colour scheme of course.), she actually asked me to do the bridesmaids and flower girls hair (you guessed it, I am not a bridesmaid!). Hair. Me? No. Spend close-knit-lovey-dovey time with her friends? Hell no! She went on to say they're going to try borrow some $18,000 to pay for this whole affair. Really? That's more than my annual income. Yet they're only going to have 40 or so guests? What the hell do they need $18,000 for??? Ok, so when she found a dress in a Salvation Army store she just loved her fiancé told her she had to spend $2,500 minimum on her dress or "not to bother". Say WHAT? These two live well beyond their means at the best of times. I think I've heard all I want to about this wedding, and right at this moment I am glad it's not until the end of 2011 because I feel so.. ? I'm not sure. Hurt. Jealous. Angry (try explaining 'proof book' to my sister, you will understand the frustration.).

Then this afternoon my baby comes home sick (from nanna's house). Again. She's all teary and miserable because she has conjunctivitis (pink eye to my American friends) as well as hay fever. It got me to thinking about all the things she's had to deal with in her short life. She isn't yet 8, after all. I also began to acknowledge how little I document of her ordeals. I have photos gallore, but I really need to talk more about it all, and the struggles that go along with. I am not the only mum out there with a 'sickly' child. I am fed-the-hell-up of having people think I am over reactive and that "at least she doesn't have Downs [Syndrome]". Right.. like the trials I have with Jessica mean nothing because you can't physically see all the suffering she endures? She is set to miss another 3 days of school with this conjunctivitis, likely bought on by her hay fever. Too much crap in her eyes over too long. I tell the nurse on arrival at the Emergency that she has latex allergy. When she went to inspect the eye she went to put on gloves and I had to ask "are they latex free?". Nope.

I have nearly lost my daughter to death, twice. By that age of 7! Don't be telling me I have nothing to be so fussy about. One was to MRSA, the 2nd to an anaphylaxis allergic reaction to chocolate. Thank goodness for the Epipen and a paediatrician who believed there really was something wrong.

During pregnancy I had placenta previa and had all kinds of warnings like not to chop firewood, hang laundry, lift anything heavy. I also had 22.5weeks of all day every day sickness (who named it morning sickness?!). When my waters broke they were almost fluro green. After she was born and they stitched me up they had to take me back in and drain my bladder to control the bleeding.

My mum left the hospital the morning after she was born because of Jessi's dad's abusive and controlling behaviour. My mum wouldn't even look at me, or say goodbye to Jess. We left the hospital on day 2, even though I could barely stand up I was so dizzy all the time all because he wanted to. The doctor put the worst fear in me that she might get jaundice if we left so soon. I walked around for 2 days seeing my baby as bright yellow!

My daughter is fully immunised.

About 2 weeks old she got conjunctivitis.

7 weeks, my 21st birthday

At roughly 3mths old the eczema began. It was on her cheeks and was so nasty. I, no word of a lie, had a complete stranger ask me outside the supermarket if I poured boiling water on her? I have so few photos of her as a baby. Subconsciously I couldn't see past the eczema and it resulted in not so many photos. People kept telling me eczema was stress related. Didn't I feel grand!

Roughly 6mths

 

7 or eight months

A 'well meaning' child health nurse suggested we relax on solids to help her eczema. She started having a lot of rice cereal and I had problems feeding her from then on.

She stopped breast feeding around 6mths old, by choice. I guess the stress really did get to her then. Also saw a dermatologist who visited the country in regards to eczema. Walked into his office and he asked what he could do for us. We said "we believe our daughter has eczema.." and his response almost floored me. "what do you want me to do about it?" he asked. Wow. He spent so much time trying to take photos of her cheeks for his website that all he did was write a prescription for steroid cream. Same as our family dr.

Roughly 6mths

About 26mths of age they finally diagnosed asthma. Treated asthma and the vomiting eased.

At some point along the way she had an admission to Kalgoorlie hospital for "investigation". They did a barium swallow and an ultra sound to see that all was ok and working properly in the swallowing and vomiting processes. They ushered us out of there pretty quick because they were busy with flu season.

She'd often vomit massive amounts, until her stomach was empty and she'd still be retching. Sometimes it was like power-chuck! I'd call nanna crying because I needed a shower, Jess needed a bath. There'd be spew everywhere. I saw our family doctor so many times. They said she had reflux and prescribed medication to suit. I never, ever gave it to her. I didn't think that was the cause at all. I also kept telling the dr about this vomiting and she'd just listen and say it was normal for babies to spew. I'd babysat since I was 12, I knew babies. This wasn't normal. About 10mths down the track she weighed her and realised she'd be losing ground in her growth charts, actually going backward! We were rushed off to PMH. Jessica was diagnosed as having 'Failure to thrive'. BEST mother moment. EVER. Not. She was started on supplementary milk drinks and polyjoule. They listened to the vomiting issues and gave her the very first lot of RAST tests for allergies. She was positive to egg and potato, tree nuts among environmentals. I queried sesame which they had no result for. Was told to remove egg and potato from her diet to see how her eczema went.

About 26mths of age the finally diagnosed asthma. Treated asthma and the vomiting eased. She had chronic constipation until about 4yrs old and took daily laxatives. It was painful to watch and no one seemed to care. Just take the laxatives.

I don't recall how many admissions she had to PMH in those first few years. It was at least 4. No one ever said anything much about her skin, they queried asthma a couple of times. They were focused on trying to get her to eat. They did start us on wet wraps for eczema. That was grueling and she hated it. I had to walk the halls with her in a stroller the whole time she was in one.

Early age 5 they diagnosed latex allergy via skin prick testing after she had a massive lip swelling reaction to a balloon at age 4. I had to push our family doctor before he finally referred us to an Allergist who reconfirmed tree nut allergy and confirmed sesame for the first time. Latex, tree nut and sesame are all anaphylaxis/life threatening allergies. We already knew about egg and potato, and environmental things like grass, animals, dust. She petted a friend's dog once and her entire face swelled like a balloon. Her eyes swelling completely closed. Treated allergies and the vomiting made a whole lot more sense! .

Age 5 was the MRSA. I had to buy her a stroller because her skin was so bad she could barely walk. I kept telling or family dr something wasn't right, this isn't her normal eczema. He didn't believe me.

Then she got burnt with her antibacterial bath oil. It was so horrible!!!!!!!

Finally got MRSA diagnosed, 2 weeks in Perth at PMH. Back for an 8 week check up and readmitted. Started huge doses of oral antibiotics, which lasted some years. Every time we stopped she break out in infection again. MRSA saw us make contact with our dermatologist, who we now see regularly. This dermatologist started her on immunosuppression therapy, using the drug Cyclosporin, to help control her eczema. Immunosuppression is used for people who are having transplants so their body is less likely to reject the new organ. Has some wicked side effects like kidney failure. Spent weeks super stressed and badly worried every time she had a cough or snotty nose. All I could think was pneumonia.

Cyclosporin didn't work too well so they switched to Azathiprine (Imuran) and she's doing much better. It has other side effects, like the warts on her hands and face, the ring worm. The fact she missed a month of grade 1 when whooping cough was going around and she was too susceptible with a weakened immune system to be near people who had it/contact with it. Her immunisation had to cease as live cultures are used and injecting something live into her with a weakened immune was more likely to give her the disease than prevent it. She isn't allowed to get sunburnt because the drugs can cause her to be more likely to develop melanoma.

She's been under general anesthetic twice. First for an endoscopy and the second for dental surgery. Our school dentist wouldn't touch her in case he had latex in his van (they visit in a kitted out caravan, school is too small for on site dentist). He diagnosed her and she was sent away for crowns, fillings and removals. All on baby teeth. She was six.

I can't count the number of hospitalisations she's had for asthma and eczema. We see our dermatologists in Perth every 8 weeks. It's some 16hr return trip. She's currently taking 4 tablets, 2 inhalers, 1 nasal spray, various creams daily, and you can often add antihistamine to that list. She has bleach baths twice a week and a bloody test once a month. Her clothes can only be washed in 1 brand of laundry powder. She still can't interact with most animals. Her linen needs washing a lot. All our linen has blood stains. She is still extremely uncomfortable in some kinds of clothing. She is still prone to infection. She is limited by shoes, clothes, toys and various other things due to latex allergy. She can't even wear a bandaid. She has a lot of broken sleep. She often gets a fat lip just from eating white bread. Cross contamination of sesame seed. She's seen doctors, pediatricians, ENTs, dietitians, dermatologists, allergists, immunologists, pediatric dentists, psychologists. She still hardly eats. She's spent far too much time resembling a mummy (of the bandaged variety). She puts bandages on all her dolls. Her hospital files at PMH and our local hospital is over 2inches thick. She sits on a 'sitting mat' at school to keep her off the carpet/grass. She has a teachers aid. She is still missing massive amounts of school, and starting to really notice how 'different' she is.
She cries "I don't want to do this anymore".
"The only thing I am good at is itching".
"I wish I didn't have allergies".
"How come other people don't have eczema?". (remembering we live in a really small town)
"It's all my fault. Everything is my fault".

I want a little girl who could live pain free. Who can pet a dog and eat whatever she wants. Who can grow into a young lady without fear of condoms, shampoo, make up. I want my daughter to be 'normal', and it's selfish of me. She is who she is and I can't change it. Oh how I know I can't change it. I'd have a thousand times over if I could. Besides all the regular childhood illness like colds n flus, chicken pox. I don't think it's fair any child should need so many needles poked into them. I've had to hold Jessi down for blood tests. Once, with 2 nurses and myself holding her down the doctor was still unable to draw any blood. She was only 3!

You tell me if you think it's fair for ANY child to suffer. You tell me if you still think my concern for my daughter is all in my head? You still don't know the half of it. Go on, tell me "it will all get better" just one. more. time. I dare you.

You tell me if this looks like anything you've seen a child endure (but of course you haven't, because they're at home or in hospital when this bad, so you think eczema, asthma and allergies are a piece of cake!)....

       

 

              

 

I lost all the photos I had saved on a thumbdrive, there were hundreds more like these, including those of her struggling to breath with oxygen masks on.

Yes, I realise my tone throughout this past was angry. It makes me angry that my little girl has to endure all this. That I can't help her. That people are so heartless about it.

Anaphylaxis Talk

Anaphylaxis Talk has moved homes. AT can now be found at www.anaphylaxistalk.com

Anaphylxis talk is an Australian based forum for anaphylaxia, asthma, eczema, food intollerance and other associated conditions. Message boards can be so informative, and bouncing your story around with others is more than helpful.

The support I have recieved from this free forum is beyond belief.

I am yet to transfer over all the latex (NRL - Natural Rubber Latex) allergy research I have compiled as I want to categorise it a bit first, but it will be there soon!!

My poor abandoned blog

One would think I had forgotten all about my blog, when infact, I think of it with fondness on regular occassions. Dragging my butt in here to post, now that's another story!!


As has been typical of my recent blog posts, life has been a rollercoaster! Jessi has spent a week in Princess Margaret Hospital, Perth. I've had to accept my bf doesn't want more than to be my friend. My sister is pregnant but has placenta praevia. There's a fire bug in town which is worrying! What concerned me was that the majority of the fires have been within 3 blocks of my home.

On the plus side, Jessica is well now! The doctors and staff at PMH fixed her up in no time and I am so grateful to them. My friend Nichola had a baby boy yesterday and from the photos she's sent through mms he is so sweet! (ok, yes, I love babies so I'm probably bias). My mum gave me use of her VX Commodore (SS, V8, red)! I am so thankful to her. I sold my car for a few hundered bucks and used that to help buy Jessi's essentials like creams, as well as a little gift for us each. Mine was Peaches and Creme yarn from Perth (never seen it in Aus before, so yay!) and Jessi's been getting bits and pieces all over the place. She didn't need anything big.

I want to thank my friends at Anaphylaxis Talk. I've mentioned it before, but it's an Australian Forum/Message Board for people with allergies, eczema, asthma and anaphylaxia. They are so supportive and so loving of one another. During our stay in PMH we got txt's, visits and even a gift from the wonderful ladies at AT. I encourage anyone who needs a support group in Australia for the above mentioned ailments take a look at Anaphylaxis Talk. It doesn't come up in a google search which is sad and frustrating. I was given a link to AT from another message board and it was lucky as the message board I was on didn't come close to fulfilling my needs. AT is where I keep information relating to Latex Allergy including email responses from manufacturers etc. There is a link to Anaphylaxis Talk in the sidebar. The best bit, it is FREE!! Was hard finding a free site, but they are out there..

I have been making clothes for Nichola's 10yr old Kristina's doll. I've sewn a "swimsuit" but it looks like a little a summer sun suit (and totally cute), crocheted mittens and beanie, skirt, shorts, halter, sandals and am sewing a little blanket. I guess it needs a few more things, like a top that matches the skirt, and something warm to wear with the mittens and beanie, and was thinking of making a nappy with some polar fleece or something. Lets see if I can manage to update this later today with some pics :) I'm really pleased with the sun suit and haven't used any patterns for the crocheted items (of course).

Busy busy busy..?

Ok, so it appears I keep disappearing! Although I don't "do anything" life seems so hectic. Trying to juggle being me with having a bf (7mths now), adapting to new challenges with my daughter, applying for jobs etc. Not to mention fitting in enough craft to keep me sane!!!

To start, my pop came home in February. It was so wonderful to have him back, watch him laughing and smiling at the kids etc. I say was as we lost him in April. He was such a precious man to me being my great-grandfather, Jessica's great-great-grandfather. It was really hard on me when he passed away, I was in Perth getting Jessi Skin Patch Tested (SPT) at an allerists. I was in Perth when his wife, my great-grandma, died also. It was like a huge kick in the guts. When I got home all my great-aunts were here and an uncle or two. Grandma and pop had 10 kids, 9 of which are living, and they were all here for the funeral. Some of them travelling from the other side of the country.

I will always miss my pop. He was just shy of his 90th birthday when he passed so I wont be too sad for him. He had a long life, saw so much, and was never the same after losing his wife of 63yrs. Loved them both dearly.

So about that SPT... He tested something like 20 things, maybe more. Added a little drop of allergen on her skin then went over them with the head of a needle and ever so slightly broke the skin. We were sent back to the waiting room while he saw the next patient, then called back in. He pulled her arm up onto his desk and counted down, then counted on a list that obviously told him what he tested where. He says "This isn't good". Me, I'm feeling all nervous and stressed as it is, so I replied "thanks for the vote of confidence" looking at my sister with questioning eyes. I was grateful she was there with me when he said Jess is allergic to Latex (NRL). That was fine really, no balloons or rubber gloves. Then he started listing stuff and saying "and she'll probably need elastic removed from her skirts and things, especially her underwear.." which made me rather unsettled. I looked at him, knowing full well what anaphylaia is as Jessi has it to tree nuts and sesame, and asked him "so, this is bad then?" and his reply saw me crying right there in his office, trying so hard to keep my head held high.. "THIS IS THE WORST THING SHE COULD HAVE". I just slumped. Jessi was trying to kiss and hug me not really understanding what was going on. I think my sister just sat quietly, I don't recall her doing or saying anything. When we went back to the waiting room to pay for the appointment a lady we'd got talking to asked how it went, I managed to get out "apparently she's severely allergic to latex" and then started bawling again. The lady says "aww.. don't cry" and that just made it worse!!

On the way back to my sisters house I was in a bit of a daze. Right away I called nanna and had a good cry to her. She was saying to me "be strong for Jessi, don't let her see you upset" and that hurt. I really needed support and worrying that Jessi was seeing me cry wasn't big on my agenda right then. I rang Neil too (my bf) and he was more supportive but also just as gobsmacked as me. His main responses were "shit. oh shit. that's not good". Every 2 seconds I was going "can she even have...?" and just wondering what kind of myriad of things she would now have to be kept away from. All the allergist was able to give me was one brochure from America about latex (NRL), he told me to go home and look it up on the net. Which I did, and that only served to overwhelm me more!! I found and anaphylaxia suport group here in Aus and joined up. The ladies at Anaphylaxis Talk are so supportive of each other, and friendly and welcoming. It's nice to finally be able to talk to others who know what this is like. Most people really don't get it. At Anaphylaxis Talk I have compiled a comprehensive list of products containing NRL as I couldn't find one on the web. Just lots of little ones.

It turns out Pecan reacted really bad too, and cashew. But we already knew she was anaphylactic to tree nuts. I guess she is allergic to almost all of them, and from what I've been reading many people are only allergic to one or two. He didn't test sesame, just took my word for it. The letter he sent back to our doctor also said orange but as he didn't bring it up I'm not too worried about it. He said she reacted to peanut and asked us about it. We told him she eats it, not often but she does eat it, and he said to give it to her 2 times a week. He said taking it from her diet would probably be worse. He wrote a new form for a Medic Alert bracelelt on the spot. It's been a lot to take in but I am getting there.

Nanna bought me a sewing machine for my birthday so I've been playing with it some. While in Perth there was a fabric store relocating and having a closing down sale to do so (why they didn't relocate it I don't know) but I got 25m of fabric for $12.50, jusy 50c a metre!! I was so happy to get such a good bargain. I also went to op shops (thrift shops) and bought remnants and patterns and stuff. Not like I needed more patterns.. I just love them :)

Some slippers from various patterns and a mostly-complete teddy bear I've sewn

I've not really been crocheting or knitting. Done some scrapbooking though. I am wanting to learn bobbin lace, but I want a kit from the Fox Collection and don't have the money for it right now. There is just so much I want to do I don't think I will ever get to do it all!

Some of the scrapping I have done

Neil is talking about moving in with us so I will have to rearrange my house again. Thats an adjustment I want, though I am a little unsure how I will cope with it. I've had 3yrs on my own with just Jessica. Neil lives with his nanna and has never lived with a partner before. Going to be a big learning curve for us both!

I applied for a job a week ago, as a Library Officer in the school. I am pretty confident I will get an interview, fingers crossed I get the job too!