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.

Emotional Break of The Day

I don't usually post this sort if thing on here, but I do feel very strongly about this and it has weighed on me so hard that I just needed an outlet. Please, rest assured, after this I will resume my normal topics :) 

Anyway... 

I Just attempted to watch Blackfish... I got 12 minutes into it and had to turn it off. I had been so excited that this documentary was being made. Orcas have always been one of my absolute favorite animals. I was ecstatic about the attention it was getting. Finally! I had to see it!

After hearing more and more, I got a little more, and more nervous. Yep, my nerves were dead on. I. Can't. Watch. It. 

But I sure as hell can support it! 

As a kid, they were my favorite animal. They now hold the #2 spot, just beside my beloved wolves - which is really what Orcas are, the wolves of the sea. They have very similar social structures and hunting strategies. That's probably why I love them both so much. They are extremely intelligent, powerful, perfect preditors. 

What this film brings to light is ground breaking. And very much needed. It's just so, so horrible. So deplorably wrong. There aren't enough words to properly describe what happens when animals are used for entertainment. 

If anyone has ever gone to Sea World and saw a show, (I did when I was a kid. It was amazing.) Or, if anyone doubts the validity of the statements made against institutions like these, then please, PLEASE just TRY to watch Blackfish. I dare you. 

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 ;)