My New Dragonfly Friend (aka: port Huber)

I got a new accessory! No, it's not a purse, or shoes, or jewelry... It's an accessed Power Port with a Huber needle. 

Ok. If you're not a dysahtonimiac,  gastroparesis chick, or some other spoonie you probably have no idea wtf I'm talking about. Here's a quick synopsis:

Wikipedia's page on it says: 

"In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free."

Why a port? You see, I have terrible - I mean terrible - veins. This saves me from needing a peripheral IV ( the regular kind that goes in your arm) every time  need IV hydration, medicine, or other treatment. It can stay in for years and is completely under the skin, and no open wounds ( except when accessed) is always a good thing ;) I am extremely relieved to have this and be able to do all of this at home! My daughter is still a bit nervous about me having this thing in my chest, but for the most part she has decided she likes it because Mommy gets to stay home and doesn't have to go to the doctors for long periods of time (aka: hospitalizations). I totally agree :) 

With the special Huber needle, I think it looks like a Dragonfly. Don't ya think? I love dragonflies :-)

Tomorrow I'll start my first saline hydration therapy (I have no idea what the crap I'm supposed to call it. The Rx says "hydration therapy", so I guess that's what it is.) 

So right now, I'm rocking it! ... or at least trying to, lol.

Fear, Anxiety, and Looking Inward

Many of us parents in the chronic illness community experience an intense fear and anxiety that we aren't doing a good enough job raising our children with our health circumstances. That our children will feel unloved, angry, or even sad that mommy/daddy can't play with them sometimes (and sometimes for long stretches of time). That our children will develope anxiety. Many parents I've talked to have said that their child/children becomes very emotional whenever they are in a flair-up. 

My daughter, for example, used to get full blown panic attacks any time I needed to lay down or go to a doctors appointment. I felt very guilty about that because her anxiety and fears are all well warranted. There have been many times in her short life when mommy has gone to the doctors and ended up being hospitalized for a week or so. Additionally, she knew that my needing to rest a lot tended to precede said doctors appointment. 

A while ago, I had posted in a support group about my struggles with this, asking for advice and/or support. Today, a friend of mine in the group responded with her own experience supporting and reassuring me that I wasn't alone. 

She wrote "My son is going on 10 and struggles with me being ill too. He often wants to play games with me but I just haven't been feeling well enough to. He'll start to cry and tell me that I don't love him and that he just wants to spend time with me. It makes me so sad." 

It is simply, yet profoundly heartbreaking. 

As I typed out my response, it just started to flow from me. And as it did, I was able to look inward. Resulting from her supportive comment, which was in response to my anxiety driven plea, came the answers I had been seeking the whole time. 

I posted this in response: 

There is hope. My sister (who is  2 yrs older than me) is autistic and also has cerebral palsy, epilepsy, and severe developmental delays. As a kid, I had an understanding of things far beyond my peers (still do sometimes) At home, we had sibling rivalry just like other siblings. She would spit at me, I would yell at her to stop, say she was so annoying, she'd spit again (she knew it was the one thing I hated most, lol) we'd go round and round. My family and I look back at those times fondly. Even though she was nonverbal, in a wheelchair, and developmentally around 18 months old (but much smarter) we were still sisters. We still bickered, and loved each other. We annoyed each other, and we stuck up for each other. I may have expressed anger and resentment towards her and my parents at times, but I never really was angry or resented having a sister like her. When I was around the ages of 8-9, I felt sad that I didn't get to have a "normal sister" and our family couldn't do "normal family" things like vacations, beach trips, getting share a closet with my big sister, having her help me get through middle school and all of its social  protocols. But as I grew older, (by age 13) I no longer envied those other families. I wouldn't change my sister for the world, and I am so proud that she is My Sister. I think a big part of how I felt ok with it and not left out was how my parents made it a priority to make time for me and what I wanted to do. I never felt neglected or overshadowed. Part of it is the age. I was like that, too. Later he'll remember these years and think of them differently. I do. 

Something I've started trying with my children is doing simple little gestures that let them know I love them and always want to be with them. I have instated an open door policy. I always invite them in when I'm ill and need to rest. They can go in and out, watch Netflix, cuddle with me, talk, or whatever works for us. If they get too rambunctious, they have to leave. Or, if I really need to actually sleep, I'll tell them they can hang out on the bed and watch TV, or play in the room but they have to let me sleep. So far, this policy has made a world of difference. They know I need to rest, but I still want to be with them. 

Another very important part of it: As soon as I'm up, I play whatever they were asking about when I had to say "not right now" and had to rest instead. Now they know that if I rest, I'll be able to play with them later. But if I don't rest I won't be much fun at all. 

Lots of hugs, kisses and cuddles. I sit with them and hold them at night as they fall asleep. That's their special time with me. You just have to find what works for you and your family. It doesn't matter what other people say (example: the theory that you shouldn't make it a habit to sit with them while they fall asleep. They'll never learn to put themselves to bed and they'll have attachment issues) It only matters what works for you and your family. Chronic illness creates a household that isn't "normal" and it shouldn't be held to "normal" standards. 

Then, I apologized for my comment being so dang long. And I'll apologize again for this post being so dang long ;)

The What and Why of Sapling Stories

So I recently (recently, as in like, 2 days ago) found out about WEGO Health and decided it was a good fit for me. So I'm giving it a whirl! WEGO has a challenge this month with writing promos for each day - the "every day" part was almost enough to send me packing right there. I was planning on cranking a quick recap of the couple of days I had missed the other day, but my body had other plans and I ended up having seizures instead. Fun. So here I am to try again!

Day 1: Why do you write? I started this blog as an outlet and actually intended it to be a family-oriented, positive parenting and pre-school activity type blog (hence the name "The Sapling Stories). As I met other bloggers and become more aware of the blogging community, my content shifted. With out realizing it, my blog became centered around awareness. Awareness for things I feel very strongly about. I just naturally started writing about them. The main one that I feel grabs my attention the most is eating disorder advocacy. I am a survivor (I feel like I should say "surviving" because recovery is a continuous thing that never really ends, or at least it hasn't completely ended for me) Actually, I had a support blog years ago on Xanga (I said it was years ago), but stopped for some reason when everyone was switching over to MySpace (my husband was also deploying for the first time and everything was kind of topsy-turvy). I battled stereotypes, stigmas, myths, and death. Now that I have children it scares me sh*tless that they might battle the same demons. My other two are Autism (special needs in general, really), and chronic illness. Special needs because of my sister and chronic illness because, well hell, that's what I've been dealing with for most of my life (that is also a huge factor into my battle with anorexia/bulimia/orthorexia - seriously, eating disorders are much more complex than society thinks!). I have found a support network in the online community that I was desperately lacking before And it has been amazing.

Day 2: Tell a bit about your conditions, 5 things you want people to know about them, and a few links to other articles you've written. Note: My links will be highlighted throughout, not listed separate ;) I kind of just covered the "what", so here's the 5 things: 

  Eating Disorders

1. Eating Disorders do not discriminate! It is not a teenage white-girl affliction. Every age group, of every ethnicity, of every walk of life is affected.
2. You can't tell anything by a person's size. Just because someone isn't rail-thin doesn't mean that they're not suffering.
3. It's not about food - not completely. ED's are complex, very complex.
4. You can't just "snap out of it" or "get over it". It takes time and will be the hardest thing you've ever done. For me it took a year of grueling, intense hospitalizations (including NG Tubes, IV TPN through a PICC, oxygen therapy, and missing my entire senior year of high school) and several years of outpatient treatment. 
5. It starts way earlier than you think. I can remember being preoccupied by the need to be "perfect" as far back as I can remember. I'm talking age 5-ish. And let me make it clear - No one ever implied that I needed to be "perfect". It's not all a societal thing, genetics and brain chemistry contributes greatly.

Autism and other special needs:

1. Just because someone has special needs (may it be cerebral palsy, autism, Down's syndrome, or anything else) doesn't mean they can't hear you (to all the smug trolls: if they actually cant hear, they still know) They know when you're being mocking and judgmental, and they feel the pain as much as anyone else.
2. The R-word is not okay. Ever.
3. Even though my sister functions at an 18month old level and is non-verbal, we still have sibling rivalry. We get into fights and argue just like any other siblings.
4. Everything has to be adapted. That bed you just bought? Yeah, that's gonna have to be modified so it's safe.
5. Everyone has to be flexible. Just because you planned a day trip to the beach that you have been looking forward to for weeks doesn't mean it's going to happen. You may get half way there and need to turn around because its not a good day for them - and you'll completely understand and go with it. Even when you are 7 years old.

Chronic Illness:

1. Everyone needs to read The Spoon Theory
2. Just because someone's in a wheelchair doesn't mean they are paralyzed.
3. Believe me, I do not want to be in bed all day! Don't give me that "must be nice" bull. It's not and it isn't funny.
4. Dear doctors: When I come in to see you and I explain what's been going on, do not look at me like I'm insane. Even if my vitals are fine, just take the damn time to check it out.
5. Just because a had a good day (or week or whatever) yesterday doesn't mean that I'm going to have a good one today. No, I don't know what's wrong or why I'm worse today when I was "fine" yesterday. I wish I did.

Day 3: Post a picture that captures your condition/your experiences 

What animal would your chronic illness be?

TDay 8: If your condition was an animal, what animal would it be? 

I initially was really excited about this one - but some of the chronic health problems I deal with (or people close to me deal with) are terrible things that I don't want to associate with any animal (I love all animals and don't think that's fair). My first thought was to assign a mythical creature to each one. Mythical creatures are super interesting and many have such complex backgrounds and characteristics that it just seems natural to link them with something as complicated as a chronic health problem. I jumped on Google and I Googled away for far too long and was still stuck behind a wall. I don't know if its the perpetual brain-fog I've been in or what- I mean, I had ideas, just nothing that made me go "Oh yes! That's it!". So, alas, that's my quandary. I do tend to over-think things and this could very well be one of those times. So I started to think about the real animal associations and figured that if I were to assign an animal, it wouldn't be the animal as the condition, but rather, the animal as a person with the condition. That is a way I can use real animals with out feeling terrible. So here's a working list of what I came up with. I still think this idea is really cool. So please, if anyone has any ideas, share them! I really want to incorporate not only the conditions that I suffer from, but the ones that those close to me suffer from as well.

Epilepsy: Mythical: Something celestial or elemental. Real: Firefly 

Eating Disorders: Mythical: Will 'o the Wisps. In European folklore, these lights are held to be either mischievous spirits of the dead, or other supernatural beings or spirits such as fairies, attempting to lead travelers astray  

Real: Hummingbird

Fibromyalgia: Mythical: ??? Real: ???

Dysautonomia/POTS: Mythical: Chimera or shape-shifter or the Hedley Kow  A very mischievous, but not dangerous, shape-changing boggart which used to plague the villagers of Hedley (North-umberland) by his many tricks (Henderson, 1866: 270-1). A farmer mistook him for his own horse, a milkmaid for her favourite cow, an old woman for a bundle of straw; in each case he caused unexpected trouble, and then vanished with a loud guffaw. He could even turn into the likeness of a girl, to trick her sweetheart into following him till he ended up knee-deep in a bog. Real: ??? 

Autism: Mythical: Unicorn - Everyone knows of them, but very few actually know them. Mysterious, illusive, and Pure. 

Real: ??? 

Cerebral Palsy: Mythical: ... total blank... Real: Coyote - Extremely clever and adaptable. Forms strong family bonds and is frequently misunderstood. 

So please, if you have any other ideas feel free to share them! Also, if you would like another condition represented on here that isn't, let me know! I would love to expand this!