Trying not to worry

Most of all our drama is wrapped up in worry.

Worry about the future, worry about losing our house (we rent ours so our landlord could literally say, hey guys I'm selling this place), worry about if our kids have may have made an fake Instagram account that someone caught....oh just me?

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My go to worry is to panic

and immediately try to fix it

By 1. Panicking 2. Getting experts to validate 3. Research 4. mMore worry 5. Calm the sh*t down and watch some television that's more no brainer. Right now those include Real Housewives and Keeping up with the Kardashians and I'm obsessed with The Profit, but then start to worry am I building a business that Marcus Lemonis would approve of? I know I'm dorky. He is my business guru.  But let's all remember that some people in the world watch Naked and Afraid, or Naked and First Date, and Naked and running from a bear or whatever it's called-so who don't you be judging me. 

For the past three days my I've napped at about 2 pm.

A hard nap, zonked out like a truck hit me. Then I went and looked at my labs and found out my thyroid has skyrocketed. Hashimoto's runs in my family and this is is hypothyroidism. I've noticed a slight tremor in my hand about 10 am, get anxious, run around cleaning or panicking I'm going to be late getting somewhere and then have rapid heart beat, calm down and then boom...after lunch I'm ready for a nap. But after speaking to my doctors it's because of a medicine I have been taking called Depakote and turns out my platelets have dropped. I worried less now as they said they are weaning me off that medication and going to let my platelets come back up and then we will see about something else.

I put on a podcast to put my mind at ease and sleep hard. 

And then I wake with worry. Because at first I thought it was the CVID acting as a problem people and there is a significant amount of people who have Common Variable Immune Deficiency that go on to get an autoimmune disease which is when your immune system, which defends your body against disease decides your healthy cells are foreign. As a result your immune system attacks healthy cells. An autoimmune disease can affect one or many different types of body tissue, depending on the type.  (Thanks google)

But that wasn't it at all.

Or so my doctors think. It was the Bipolar meds. Less you think, should on bipolar meds, aren't there side effects? Of course there are.  They worry me. To be honest I'm not sure. I'm not convinced of what to do yet.  I can't function without them yet so I'm on a path to have one fit on one side of the spectrum and one side of the other. I'm still learning and early. But I have two children who need a mother who can be them for them. I need to be able to sleep and eat, two of my biggest challenges.

And yes I  am worried about the medication.

I've already been taken off two meds because of adverse affects. 

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Rylie goes at lighting speed

Just like me. Let's see what she creates? I'm excited to watch what she does.

So after I got myself together, and after Rylie, my littlest five year old was losing her shi*t in the next room because she accidentally broke an ornament and was afraid I would be upset. (I thought those were shatter proof?????) Kurt and I made our sweet potato and black bean chili and my awesome guacamole. It's really the only thing I'm good at cooking wise so far. Ii'll have to start getting better because I committed whole foods diet is in my future. 

And the worry subsided and we watched non fluff television, an inspiration series made by RedBull Documentaries Called Visions of Greatness

Worry is a naturally part of this process and something that learning meditation, and putting systems in place will help me worry less. A friend of mine, considered a mentor now is going to help me learn to change my inner mantra of I'm going to die to I'm going to live. That should be interesting and fun and something Molly last year would never have done.

Thanks for listening,

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Do you worry too? What about? You can tell me here.

A few steps forward a couple steps back

Merry post Christmas!

It's been a flurry of activity and we are almost to the 2018 and I have good days and I have bad days. Some days I'm wrestling with my mind which ramps up and other days I'm wrestling with my body which is breaking down. It is very obvious that I need to rest. It is so difficult for me to be patient and know that this will all work out in time. 

My life has been confusing because it's difficult to tell when I'm "acting" at being calm and when I actually feel calm. I've been diagnosed Bipolar 2 disorder for about a month now and it's different than any other "project" I've ever had to work on in my life. It comes with doctors appointments, meds, therapy appointments, sickness, too much meds, changing meds, ER visits (well one actually that I will detail for you-both hilarious and scary), meditation, living with the knowledge that people don't believe it's an actual disorder, or that it comes with a deep amount of shame, or that I'm doing something the wrong way. Everyone has an opinion, just the world has an opinion. You read articles, they all contradict each other. So I go with my gut. And I lean on Kurt to help me with that instinct.

I've been sick this holiday season and had to go for a round of antibiotics.

All the while, I continue my opposite life: two flash mobs, a Studio Molly Cool Yule Dance classes, a fun live holiday video card that I produced for Fleet Feet Menlo Park, it's awesome check it out here!  I edited all day on Christmas Eve day in a state of flow leading to believe, oh maybe this is what I should be doing. I have so many ideas all day long. I keep waiting to say, this is the last one. But it doesn't come yet.

I'm not done being an artist. I want to create still. Still a week off should not feel like it's going to kill me. But it kinda does, in a weird way. Like I'm not feeding myself somehow. 

We make Christmas special for my kids, and then I start to worry that it's too special. That they grow up with a sense of doing no service in the world and that's mainly because I'm so busy thinking, doing projects for Studio Molly. And so I turn to a project that will add value to the world that I plan to release this week. And so I got sick and then that is why at midnight I simply posted on Christmas eve that I was tired and sick, and posted yet another video, since I had been in the recording studio I took advantage of some of my time. I'm just being honest. It's rewarding and at same time it's hard. Hard for me to stop. I take advantage of every opportunity. As if I'm running out of time. And now maybe I am running out of time because I can't stop. So I guess this is not a good week for me, I would say. That's okay. Patience.

It has become obvious in the last three days that my body is starting to give out. I have to change. I will not be able to sustain at the level I'm going and I'll write more about that. I think my job now is to wait, be patient and see if something will come along to help me with that transition, rather than trying to pull myself up and make something happen. Just sit and be still for a while. The hardest thing for me to be. 

 

 

It's a hard knot life: How I head off "knots" from my Hizentra infusions

Each week I look like Sigourney Weaver in Aliens. 

My husband gives me a subcutaneous infusion called Hizentra which is a very expensive medicine, somewhere between $5000-$8000 a pop and I receive this once a week, at home, in the evenings, usually on Mondays and I do this for very specific reasons. People have different experiences, and I found this link to be helpful.

Below is specific to me and everyone's reactions and ideas are unique to their own body.

I use ice to keep swelling down, some use heat to help the rate of the flow. I'll talk about about flow rate at another point.

  • This powerful medication often makes me feel tired alongside the Benadryl, I take in order to keep the side effects down.
  • I get quite large balls that pop up on my tummy during my infusion. They're often referred to as knots because they are hard.and painful.  I use ibuprofen to help the pain. I also put a huge ice pack on my tunny while I receive the infusion and then after while I go to sleep, AND the next morning. 
  • I typically dance or exercise the next day, but I wait until Tuesday evenings so I've had a little under 24 hours to recover. I wear tight pants that (and sometime a waist trainer type thing to keep my stomach in place) because it hurts when I jump, or do that kick-ass hip hop class.
  • On day three it starts to go down and I no longer look puffy, more like two months pregnant, but sometimes still sensitive. 
  • Repeat the next Monday (or Saturday or Sunday if I'm starting to get sick and we feel I need it).
  • One thing I forgot to mention. It greatly benefits me to hydrate the day before the infusion, the day of the infusion and the day after the infusion, which for me is a pain in the ass. I have a small bladder as it is, but I do feel oh so much better. I pee all day long. As a result, sometimes I don't do such a great job. However, I can really screw myself in dance class the next night and start sweating profusely as a result of not enough hydration. So, heed my warning. I usually drink a little lemonade with mostly water. I also use a electrolyte replacement drink that my husband picked up for me. I use Ultima grape flavor because it reminds me of otter pops.

I didn't really know what to expect so I thought it might be a good idea to show what happens for those who may be about to start this type of treatment.

Side effects will vary from person to person and also because the medicine you receive is from human plasma and is therefore variable.  

My main side effects are knots, tiredness, sluggishness, and my tummy hurts for about a day a half. I can take the infusion in other areas, I just haven't tried it yet, but will do so soon because using the same area each week can cause scar tissue. Other people have other types of side effects and some can be severe and indicate you should call your doctor so check that out here.

There are a few other options here and I've listed them for your reference. There is another recently released med by a company called Shire called Cuvitru. (Where do they come up with these names?) Here are the rest of them and a quick overview (however probably best to take a look here.)

  • Gammagard Liquid-immune globulin infusion 10% solution – Baxter Healthcare Corporation
  • Gammaked™ Immune globulin injection 10% caprylate/chromatography purified – Kedrion Biopharma, Inc.
  • Gamunex® -C (immune globulin injection 10% caprylate/chromatography purified – Grifols Therapeutics, Inc
  • Hizentra® immune globulin subcutaneous 20% liquid  CSL Behring
  • HyQvia immune globulin infusion 10% with recombinant human hyaluronidase – Baxter Healthcare Corporation

Do I like subcutaneous therapy better than Intravenous? I guess so. I used to have to think about all this once a month. But it was a trip to the hospital, a four hour infusion, one time the nurse accidentally didn't connect my IV to the drip and it was spilling out for 45 minutes with no one noticing, so that's $3000 down the drain...just a mistake, no ones fault, and it's a little depressing. I looked like frickin' Elle Woods with in the infusion clinic because I refused to not get work done. (Bipolar anyone?) The SubQ allows me to be home, with my kids and husband and comfy and I can go straight to bed if I feel like I need to. However, it's weekly. Not only is it weekly but I think about it several days. The courier drops it on Thursdays (because it's so expensive, luckily we both work from home), I hydrate Sundays, infusion is Monday, I hydrate Tuesday and get knotted up and then hope I can make it to my dance class Tuesday night. In other words, it's a lot of mental energy each week. 

It keeps me alive and kicking so I'm not here to complain. I do think a lot about those who can't afford what we can. In fact, I just read something about medicare. Will I need to worry about when I turn 65 getting this covered in retirement? That's more than 20 years from now, still something to think about. At the very least something to write about, huh?

Did you know there is a monthly free magazine for people with chronic immune deficiency?  I highly recommend it. You can sign up for it here.

Pushing past illness and CVID

Two years ago I finally got a diagnosis after 25+ years of being sick. 

I’ve had a history of infections since around the age 18. I don't remember being sick as a child, I'd say more "snotty".  I always walked around with a stuffy nose.  The first symptoms of Common Variable Immune Deficiency (CVID) that I can recall were mostly gut related with ear and tonsil infections sprinkled in to keep things interesting.

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