Thursday, August 1, 2013

Just Mildly Medicated has moved, please visit and update.

Hello!

I have had a few readers send questions regarding the new Just Mildly Medicated. Yes, it is the same blog just moved to a new location.

Please take a minute to visit the new Just Mildly Medicated and update your email address to continue receiving new posts via email.

If you are following via Facebook or Twitter you may have already seen the links for the new blog. 

I hope you continue to follow me on my journey as a wife, mother, chronic illness advocate as well as patient.

Carrie, the Just Mildly Medicated gal
http://justmildlymedicated.com/

Friday, July 19, 2013

Fridy's Letters; Mom Rap for Fiat v/s Sienna Minivan Parents Swagger Wagon

Dear Advertising World,

I love it when you get it right. Some companies seems to just get it. We just LOVE a good commercial, I mean who doesn't? Some of us (like me) are just waiting for the next ad to love. We love the Super Bowl commercials as much as the game... okay well I love the commercials and spend time surfing the internet when the game is on. I understand a few people watch the game. Anyway, please brainwash me with your witty advertising, please.

Thanks,
Me

So Just Mildly Medicated readers, this had me wondering, do you love the Mom Rap for the Fiat 500 or the Sienna Minivan parents about Swagger Wagon life?






Fiat 500 Cinquecento Cap (Google Affiliate Ad)

Monday, July 15, 2013

Parenting over summer vacation and how I am going batshit crazy...

Summer Vacation

Warm Weather, Family Time, Kids Laughing

Batshit crazy mom…

I am finding myself being so repetitive that I feel like I am going batshit crazy at the sound of my own voice. I am sure every parent has a phrase or two that make them wish they had it recorded on a loop. I do think parents at home with kids over the summer get to lay claim on this version of insanity.

I figured I would share mine with you.

(wish I could give a source but there were about a million)

 No running in the house!

So I am not the cool mom who has games of tag in the house. I have friends who do and they are awesome and fun. Truth be told I don’t have room for that in my house. It’s not a small house but it lacks the open floor plan for tag, obstacle courses, and riding scooters.

Okay, true truth be told I probably wouldn't let them run if it did.

The question I have is; why do I have to say this daily, and several times at that? My kids have been with me their whole lives…

Where are you going?

We live in a neighborhood full of kids. If you remember most bore witness to me with no bra on. They ask in angle voices “Can we go out to play?” My 10 and 7 year old boys get shoes on and hold their four year old sisters hand and open the front door to go out to play.

In chimes mom “Wait, where are you going?” They look back like I am bat shit crazy. “Where are you going?” Blank stares for a few seconds and the older son says “Outside…” “Okay, I know that, where outside?” More blank stares...

Again, these sweet children have known nothing but my mothering… WHERE ARE YOU GOING…

What are you doing up there?

My kid’s bedrooms are upstairs; they think I can’t hear them at all when as any parent in a two story house knows the sound of them playing upstairs seems to shake the house. With that said when the house rattles at the same time as one grunts loudly and yet another makes a barking sound and another yells “I’m telling” a mom is forced to go to the stairs and yell “WHAT ARE YOU DOING UP THERE?”

The response is usually “nothing.” I mean really, we’re going with nothing… then I walk back to the couch with the balance of a wineo (not because I am drunk but because I am parenting from the couch as best I can)

Do you want to watch a movie?

Two things surprise me about this. One is that there are still family friendly movies in the NetFlix que that we haven’t watched; the second is that my kids still say yes. I thought they’d be tired of movie time with mom but they still say yes. Thank goodness because movie watching is something I can do. (or I can read a book while they watch)

Me reading A Game of Thrones 


Time to clean up.

I wish they understood I am just as tired of saying as they are of doing it. I love that we have lots of awesome things to do in the house but when they take off to play in the ever elusive ‘outside’ and I turn to see a table of art supplies in what I’d like to call beautifully creative disarray I know I will have to announce that it is time to clean up and be met with disappointed faces.

Your turn, what are you saying repeatedly this summer?


Tuesday, July 9, 2013

Injectable Power Port to treat Dysautonomia; The First Month

I was waiting to sort out how I felt before writing about the things that are currently happening. That was when I remembered the quote I love so much and decided I need my laptop to help me sort it all out.

“I write because I don’t know what I think until I read what I say.”
Flannery O’Conner

My last post was about my first week with my power injectable port to start regular IV therapy as a preventative treatmentfor Dysautonomia, specifically the Orthostatic Hypotension aspect of it. I've had a few emotional swings about the port as well as the IV therapy itself and was hesitant to share my feelings because it may not be well received by many who believe it to be the coveted treatment option.

To go back to where I left off in the first week of IV therapy; the first dressing (massive sheet of tape that goes over your accessed port) bothered me so much that in the wee hours of a Sunday morning with absolutely no sleep I began to understand why wild animals gnawed at their own wounds in a grotesque fashion. I was one strip of sanity away from doing just that myself.

I called my home infusion company at 8 am that Sunday morning and begged them to get word to my nurse to please come help me before my sister in law who was visiting was going to have to check me into an institution. They sent someone right away and the nurse actually said I should have called hours ago when it was first making me insane. She was set to change the dressing but I wanted it out, the bandage and the needle. I needed sanity and didn't think I could achieve it while accessed.

The next time I was accessed we tried a different dressing tape that was an improvement and then a third that hasn't bothered me at all. YES! 

Me while NOT in the throes of insanity with the second bandage type.
However going through 6 liters of saline a week I was still at best mildly dehydrated. I am still playing catch up and have yet to reach a point where I am ahead of the dehydration. I don’t yet feel like I have reached a point where I am truly using this as preventative. I have spoken to my doctor and we are adjusting how many liters a week I should do and if a few saline bags infused with vitamins might help me get ahead of this.

During the first month of IV therapy I have had the same number of episodes, some convulsions and others syncope or what I refer to as a pretty intense pre-syncope (a very hard time keeping conscious with slurred speech and very disoriented but remaining conscious) . I have been able to do more and I can sit up or stand for longer before feeling dizzy. By longer I would say that before I had five minutes or on a great day 15 minutes, now I have more like 15 to 25. However I am hooked up to an IV for six hours three days a week for those extra few minutes.

I will say though, I have done a lot more this month than I'd normally have done. My husband left town the day after my port placement and even with the help of family and friends it has been more taxing. I also went on vacation, my parents did the driving but I was in the car for a 10 hour trip and away from home. Not to mention the stress of learning everything to do the IV therapy at home but to do it at an unfamiliar place was different.

My current belief is that this is a lot of work for an extra few minutes before Dysautonomia grips my blood pressure and pulls it down. I am still  early on and trying to find the amount of saline that works for me as well as the speed at which it is best infused. As you can see my review is mixed at best. I hope to find the right balance for me soon.

infusion day

Wednesday, June 5, 2013

Injectable Power Port for IV therapy to treat Dysautonomia


As much as I hate it when I read a blog post that starts with “So it’s been awhile...” or “Sorry I haven’t posted in a long time…” this is kind of that post.

I've been super busy. Okay not really, but I’d say super busy for someone who considers making lunch, checking the mail, and doing the dishes a pretty full day.

Okay kids gather round and I’ll tell you about the first week of having an injectable power port…

Quick basics for those who are not familiar; a power injectable port is a small medical device that is just beneath the skin usually put in the upper chest, just below the collar bone, mine is on the right side and goes into my jugular vein. Medications can be given and blood can be drawn from the port. Ports are mostly identified with people receiving treatment in the medical area of oncology and hematology.

Dysautonomia patients can often opt for port usage for proactive treatment to combat frequent dehydration and elevate blood volume to hopefully avoid syncope (fainting) and the need for multiple IV treatments post syncope. 

Okay, now back to me!
This is an image of the Smart Port power injectable port that is in me
I had no preference in the brand of port and left that to the
surgeon who performed the procedure  

(BTW I am a total newbie at this so the terminology is new to me. This is my first few days with the port)

So it started with a call to my Dysautonomia Specialist. I had passed out again and had a hard time coming out of it. It was that syncope that wanted to take you over, you start to come to and sit up slowly and BAM your vision gets blurry and you go right back out. I had no issue getting the IV at the ER but in the past they have said no, or admitted me for observation instead of the IV my body was so thirsty for.

My specialist and I agreed it was time to be proactive with regular IV therapy but I wasn't sure how I wanted to go about it. There are a few options. 

  • You can just have a new IV done each time but my doc wanted the therapy three times a week so that was not a first choice
  • The PICC Line is the next option and has some huge pros. It isn't a surgical procedure and they can be used for anywhere from 2 weeks to 2 months before needing to move location. The cons for the PICC Line were from people who have used them mentioning the inconvenience of having something sticking out from you at all times and you cannot get it wet (increased risk of infection) and the covering for it sometimes let water through. 
  • The next option was a power injectable port. It is an out-patient procedure although sedated enough to take the edge off you don't need to be put under and the port can last for many years. While accessed it does need to be covered but when not accessed the port is under the skin and though it can look like a small dome it is not as noticeable as having something like a PICC Line accessed all the time.


I went for the port which was what my specialist had wanted. Their office called it in and within 2 weeks I was scheduled for my port placement.

The procedure:


I was scared, like really scared. I am someone who would prefer to be knocked out for dental work let alone something being inserted in my neck/chest. When I got to the hospital they put me in my room and did some labs to make sure my clotting was up to par then I waited.

I passed the time reading Game of Thrones until my mind started to wander. Am I sick enough for this? Ugg I hate the train of thought when I admit I am too debilitated by my illness to do normal things, like shopping for clothes or make it from the car to the baseball fields where my sons play but I also know there are people much more debilitated than me. I battle for quality of life other people are battling for life.

So then I didn't like how deep I was thinking so I opted to Google songs that I thought would make great theme songs. (A conversation with Vicky over at The Pursuit of Normal) 

In case you were wondering I didn't change my theme song choice, mine is Truck Yeah by Tim McGraw. I did consider the part of Honky Tonk Badonkadonk where Trace Atkins says “Left, Left, Left, Right, Left”. It would be a good reminder of cadence to help me when walking. It is decided, I am totally adding You Tube links for those who either have it in their head now or those who have no idea about American country music and need to know these things.






Then they came in to wheel my bed off to the OR… ahhhh! I’ve changed my mind, forget it I am going home… Okay I was thinking it but I didn't say it. They went over the procedure and we got started, well they got started, I just laid there.

If you are considering this procedure, as many Dysautonomia patients are, the worst part is the injection to numb you, it kind of feels like the dentist numbing you only maybe ten times as bad and in your neck (sorry being honest). All and all for a surgical procedure it was not bad. After 3 hours bed rest I was about to start the discharge process. Although I think when I watch movies where someone gets truth serum injected into their neck I might have some PSTD flash backs.
Me during the first 24 hours. A former plastic surgeon did my
port placement, I know you're jealous ;)

I was so sore the next day I wanted to kick my doctor and every one of my spoonie peeps who said they loved having a port. By day 4 I wasn't very sore at all, which was good because the nurse came to do my very first IV therapy. Now even with the port you have options as to what needle and how much nursing assistance you’d like and how much you feel you can do on your own.

This day 4 post-op before being accessed, the 22 gauge Huber,
and then accessed for the very first time 

Me getting accessed and my first port lesson

I will have therapy M-W-F so I have opted to have a nurse come on Monday to access me (put the needle in and dangly IV connector and cover the area) and stay accessed until Friday. As of now the nurse will come on Friday to remove everything and I will be free of it until she (not being sexist, the company has 3 female nurses so it’s she) comes Monday to access it again. On the in-between days I do need to flush the port with saline and then heparin. I did the flush of the port with the nurse yesterday after my first IV therapy and today, my off day, by myself.

The big questions from fellow Dysautonomia peeps... 
"OMGosh WILL YOU GET TO THE PART WHERE YOU TELL US IF IT WORKED???!!!"

I am only doing one bag Tuesday and Thursday of this week, my orders are up to 2 bags 3 times a week, so I am working up to finding my sweet spot right amount. I hoped to feel energetic after the bag was done. I didn't. I was cold which led me to lay under a blanket on the couch which left me feeling tired. I also felt a bit fuzzy after standing up and moving to a better chair to unhook the IV and do the flushing. I will add that I didn't sleep the night before.

A few hours later was dinner time. I made dinner, we ate, we (kiddos and I, hubby is out of town) cleared the table, and then I packed lunches for 2 of my 4 kiddos for summer session at school. Afterwards I sat down and realized I hadn't taken a break leaning over the counter which I normally would have done. 

However when I did orthostatic numbers that night I was just as all over the place as a regular good night with readings of my HR being 67 to 92 and BP from 139/80 to 119/75. Again, not “bad” number fluctuations in the world of Dysautonomia just that they are the same in fluctuation as I’d have a good evening before proactive IV therapy.

Next week I'll do a bag and a half M-W-F and will hopefully have great things to report.

Want to know more about Dysautonomia click here


If you have comments or questions on anything I always read the comments posted. I will answer, even if its "I haven no idea" and reply so you can stop back to see the response or I think you can click something to see responses. I also love you more when you comment… it’s true.

Tuesday, May 14, 2013

Coping with Chronic Illness


I remember the day I was officially diagnosed with a Dysautonomia. My husband and I were overwhelmed with questions, information, and emotions. I was scribbling down notes and trying to remember everything. 

That was a much anticipated appointment. The specialist was about a 15 hour drive from home and a bit of a celebrity in the Dysautonomia world. We knew we had limited time to get the answers to questions we had been asking for over a year.

I found the notes from that appointment today. While flipping through them I remembered all the mixed emotions from that day. I was part worried he would say that I did in fact have Dysautonomia and part worried he’d say that I didn't. didn't want to have any type of illness, but it was inevitable that something was wrong and I figured it would be easier to have what this doctor in front of me specialized in than to have to start over somewhere else.

After some time looking through the notes I started to remember more specific thoughts during that conversation. Mostly about a small part of the three hour appointment when he spoke to us about some things I might feel after everything sunk in.


*Denial and Grief – Done. Felt that when the very first doc said “You should see a cardiologist as soon as possible.”

* Relief of a Diagnosis – Done. Hell I was down-right excited to have words for how I felt other than “I don’t feel good.”

* Empowered – Done. I was learning what exactly was happening to me and why. I was empowered that day.

* Depression – Skip. No need for that one, I have an awesome husband who is supportive and wonderful family and friends.

* Acceptance – Awesome. I am already becoming empowered; acceptance should be what, maybe a few weeks away.


Clearly I saw these things that I might feel as a check list that I could run through.

What I clearly had was no idea how coping with a chronic illness worked.


I would say most people assume that because I am open about having a chronic illness and do my best to bring awareness to Dysautonomia that I am empowered and accept it. I have actually had someone say “You seem to embrace it”. It felt like the time to shed light on what coping with chronic illness has been like for me thus far.

Denial
I was not as safe from it as I had previously thought. Apparently even when you know the information and have had almost all the tests done (still waiting on those cool Mayo Clinic tests) denial can work its way in.  I am in the process of three things that will hopefully improve my quality of life; a trip to the Mayo Clinic, a power wheelchair, and regular IV therapy.

I cannot convey how many times I have doubted myself while moving towards these things. Negative thoughts have caused me to put off moving forward with treatment options because I would think to myself that I can’t really need it that badly. Why in the world would someone second guess something to improve their quality of life, things their doctor has suggested? Because you're in denial.

Denial and I are picking up lunch at the Just Mildly Medicated Cafe
apparently you don't get to revise the menu ...



Relief of a Diagnosis
That part was very true. I was actually happy for weeks after that appointment. Not only was it not just in my head but I wasn't lazy or over dramatic. I had an answer, actual words I could say. “I am sorry guys, I can’t make the festival this year. It is too much walking around with Dysautonomia.” Instead of saying yes and worrying if I would get dizzy or feel sick and seem distant or annoyed.

Then all of a sudden the back lash hit. Now that I have a diagnosis I actually have something, and the something has no return policy. I was overwhelmed with the concept of being sick for real. Laziness is mind over matter… your Autonomic Nervous System is matter over mind. Even Bruce Banner couldn't control his heart rate. In all seriousness this realization was the beginning of the next stage.

Grief 
I became sick slowly over a span of a few years. I felt like I had time to adjust to my new normal instead of a sudden onset. For the most part that was true. I was prepared, if at all, to grieve about what I used to be able to do.  All of a sudden one day I realized I wouldn't go back to work the way I had assumed I would. 

That isn't to say I am not a functioning productive citizen because I am, but it wasn't going to be in the way I had assumed. I spent time grieving an idea, and that did lead to a bit of depression.

Depression 
Depression for me wasn't what I expected. It reared in an angrier version of sad, or a bitter unexpected manifesto of the two. I second guessed my life, my very happy life as a wife and mother of four. If I had made other choices maybe I wouldn't have triggered this slow progression that has now consumed so much. 

Empowerment
Empowerment did come through researching, writing, and connecting. Blogging as well as reading other blogs and getting to know others who have medical issues, those have been outlets to express and learn. It has given a value to going through all of this. I still don’t feel so warm and fuzzy about Dysautonomia.

Acceptance 
This one seems a foggy illusion. It's like the way you prep for a conversation and run it through your head only when the time comes no one says what you thought they would and you’d like to hit some kind of rewind to keep things on track better. I think acceptance can be a particularly hard one for me because others assume I am there. I mean how could I write about this nonstop if I don’t accept it? I think the answer is because I am in the hopes it helps me get there.

The biggest thing I’d want to share is that my original view, the check list version of the stages, it just isn't how it works. Acceptance isn't a location you arrive at and think ‘wow that was a long drive’.  It is normal to transition back and forth through these stages, sometimes quickly. I've had denial, acceptance, and more denial all over one specific thing in one day. You can assume you will be impacted in one way, like I did with grieving, and it actually happens in a way you never considered. It is a roller coaster.

How has your journey been different than you expected?

*These stages are from a conversation with one specialist where many other medical issues were covered. This is in no way meant to be the psychological guideline of dealing with an illness but more of a personal evaluation of my own experience.

** If you feel you have been in any stage for a period of time that is causing a negative impact on yourself or those around you seek out you physicians help. 

Friday, May 3, 2013

Funny Friday: My Facebook friends are asses.

My Facebook friends are asses, kind of awesome asses but yep, asses.

I came out of a chronic illness fog and took a shower, added some fake tanning lotion so I could look a bit more like part of the living world, and actually did my hair. I admit I lost the energy for the effort and threw on a T-shirt and pajama pants and and didn't even consider make up, but the point is I was more together than normal. Now as my chronic illness peeps know this is a feat for celebration. I needed photographic evidence that I was out of a zombie-like trance. 

My photographer is four years old so most of the pics were of my leg or had such a blurry artistic edge I was unidentifiable. So like any 16 year old (or mom with no one around to take a picture) I selfied. 

Selfie - A picture taken of yourself that is planned to be uploaded to Facebook, Myspace or any other sort of social networking website. You can usually see the person's arm holding out the camera in which case you can clearly tell that this person does not have any friends to take pictures of them so they resort to Myspace to find internet friends and post pictures of themselves, taken by themselves.
Urbandictionary.com

Ouch Urban Dictionary, I can't help it that I am home alone geesh!

So on to how my Facebook friends are asses. I mean they are actually awesome but for the record in this post they are asses. I trusted them, I really trusted them. I cannot believe they have put me in this position. 

What position you ask... 

The position of looking like the crazy lady that brings her dog to Walmart for a photo session. Okay dog lovers, I don't mean PetSmart photos with Santa or even family photo with your dog included, I am all about that. I mean blue back drop with a "photographer" telling you to look off in the distance (that would be the dog) creating a cheap kind of creepy image. 



I am not fishing for compliments, I think its kind of cute... dog looks a tad stoned after looking at it too much during this middle of the night review. For all intent and purposes it is a fine photo and once almost 40 of the Facebook asses liked or commented on it I thought to myslef "self, lets make it a profile pic." 


Well as you know profile pics are tiny, and it looked even more portrait studio crazy.


So I updated my status "I just noticed my profile pic looks like a goofy walmart photo backdrop... it's a denim couch. You would have told me if I look like walmart photo girl right? Hmm can I really trust you? "

So as of now you are thinking holy narcissism woman, who cares about your selfie Facebook picture. I promise it is worth it. 

My Facebook friends (who are asses because they didn't mention this BEFORE) pretty much confirmed my suspicions.  I continued it further by really deciding if it was bad 80's creepy photo or more of a school picture. 

That is when the awesomeness ensued...

I kid you not, this is where the asses became the awesome.

I was sent this...




Oh yes and this...

Then this...

If you were wondering I am leaving the original as a profile picture for awhile. Mostly because I don't feel like showering and doing my hair in the same day but also because it reminds me that my friends are asses, but awesome asses! 

HOUR LATER UPDATE: My amazing blogging buddy pal saw this and said "I did tell you that. I made a Walmart comment." Sure enough on the original pic in with the comments was "Vicky the awesome chick from The Pursuit of Normal "Wow! Walmart had some creative backgrounds. Just kidding;)"