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Meth Monday: The Devil Wants His Due

I struggle with whether or not I want to share my live journal about my latest round of medications since I often dance around the subject here and there I don’t want to fill you in on all the gruesome details and I certainly don’t want my blog to become about documenting my illness. I have always been and always hope to be the positive voice among some of the sucky stuff that my son deals with in having Spina Bifida. But as I teach him how many people have come together and learned so much from his story through this blog and Spina Bifida Connection, I can’t help but note my own hypocrisy in not being more open with my own story.

I am an over googler. When I want to know something about a medical condition, I want to know the exact precise timeline these things happen. Did I ever share with you that when my father passed away I sat there holding his one hand and with my other I was googling terms like “how long after the toes turn blue will his breathing stop”. I am just the kind of person that needs a blueprint. The more prepared I feel the better I can cope. But when I google this for a blueprint I just see general talk. So, here is my experience for those of you looking for what to expect.

This new medicine I am taking is called Methotrexate. It is joining its earlier friends of plaquenil, savella, and prednisone and 5 other daily meds (yes, I have a granny pill holder now) to wage the war on the autoimmune disease destroying my body called lupus & fibromyalgia. The goal of bringing Mr. Meth onto the team is to destroy my immune system so that it will stop fighting itself.

Battle 1of 52 began yesterday and here are my honest real-time journaling thoughts not edited as it happened:

Methotrexate Day 1-

Saw a movie with the family this am and then went to Tokyo Joes.

Took first meds at 12:30.

1:45 I have read accounts of being able to tell when this stuff hits your bloodstream. I think it just did. A bit dizzy and lips are tingling. Stomach is burping and I am sweating up a storm. Sipping white blossom tea from Tokyo Joes wondering why the hell I decided to take this with all I have going on this week. I am so stupid.

4:00 pm went over to sprouts to buy ginger and other stuff for nausea. Sleepy and dizzy and stomach feels like lunch is just sitting there. Good thing DH drove cause I think I would have been too dizzy. Feel like I am in that place between drunk and buzzed.

7:45 pm felt much better last few hours. Still a little dizzy but was hungry for dinner and ate my share of ribs

10:15 no stomach problems other than the heavier feeling today. Just took all my regular meds except vitamins. I would say overall today I felt MUCH better than I had expected. My overall lupus symptoms seem the same. I do have a dry mouth and feel like mouth sores are coming on. Using more steroid wash than usual.

Methotrexate Day 2-

6:30 am-slept great. Woke up still sleepy and nauseous

8:50 after power bar, small amount of coffee and morning meds, stomach gremlins and sweating have set in. 3 times in the last hour. Stomach cramping is terrible.

Somewhere around 12-  feels  like a devil was being exorcised from me.  The sweating, cramping, shaking and constant pouring of vomit and well, other things *edited made me not be able to lift my head off the bathroom floor. Finally got back to the bed and am praying for some sleep.

3:00 feels like round 2 is coming on. My head is killing me. I slept but all the tummy stuff is coming back.

5:00 Was able to sleep. Feeling better.

6:00 chips, hummus, and Gatorade–these are my new friends

Day 3-

woke up feeling pretty darn good.

1:00 had to go downtown to a new dermatologist to have some lesions looked at. Thought I was feeling fine until I got about halfway there. Driving was a big mistake. I got dizzy and sleepy. Noticed myself stammering at the doctors. That feeling of buzzed was back but this time it doesn’t feel like a good buzz.

5:00- no tummy troubles today. Just the general head fogginess. I hope this doesn’t mean I wont be able to drive until Wednesday’s each week. That will suck.

But you guys, in all of the yuckiness known as Monday. THIS made me smile. Isn’t this the coolest thing ever? That is my friend Jo. She makes me happy :)

So, TMI? or if this does help you please let me know. It will make me feel much better that my over-sharing is warranted…

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A Gift of Time

Next weekend I start a year long treatment of a low dose of weekly chemo to get my body under control. It sounds worse than it really is. You take the meds once a week and can expect to be sick for a couple of days following, then have some good days in between the next dose. The goal is to trick your immune system into stopping the internal fight going on, wiping out the good with the bad. I’ve been told the biggest effect on my life will be a lowered, or compromised, immune system which may will put a damper in my social and travel life, cause you are all germy creatures.

I am choosing to share this not because I want to hear the collective pity party. I’m posting as a way to set a universal intention. An intention to use this gift of a year to slow down. Take better care of myself. Read some books. Find ways to streamline my work life while building my business. Take a walk and finally get back to daily yoga or meditation. Eat and cook recognizable foods, removing as much processed as I can. You know, in general, get my act together.

I am not going to lie. I am scared. Not at all about the new treatments. But about actually concentrating on myself. I am not comfortable being the center of anyone’s attention, including my own. I don’t know what it is to turn down a conference call because I am doing yoga. Or outsource things so that I can truly focus on what is most important. But I am going to try. Because the universe throws lots of things at us and we have to decide to see each one as the blessing in disguise it is and learn from it.

That’s my intent anyway.
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If This Were My Last Post

Much has been said since Friday about the horrific mass murder that took place here in Aurora. Many people have written eloquent words in an attempt to frame their emotions at a time of such loss. I have no words. Because the words of Jessica Redfield (Gwahi) keep rambling in my mind haunting me in a way that is quite unexplainable.

She writes on her blog on June 5th:

I can’t get this odd feeling out of my chest. This empty, almost sickening feeling won’t go away. I noticed this feeling when I was in the Eaton Center in Toronto just seconds before someone opened fire in the food court. An odd feeling which led me to go outside and unknowingly out of harm‘s way. It’s hard for me to wrap my mind around how a weird feeling saved me from being in the middle of a deadly shooting.

She shared this on a blog it appears she hadn’t touched in 10 months. Her brush in almost being in the center of a shooting moved her to a place she felt she needed to write. I know that place well. So many of my posts write themselves. They come to me as things I simply have to write and stick with me until I do. It doesn’t matter who reads it, but I have to put it out there. Like this one, which ironically enough I wrote a version of last night that disappeared into the great internet abyss instead of publishing. I took it as a sign but today it won’t leave me alone. She won’t leave me alone. A early 20 something girl I have never met yet identify so closely with.

After describing the events she witnessed that day she goes on to say:

I was shown how fragile life was on Saturday. I saw the terror on bystanders’ faces. I saw the victims of a senseless crime. I saw lives change. I was reminded that we don’t know when or where our time on Earth will end. When or where we will breathe our last breath. For one man, it was in the middle of a busy food court on a Saturday evening.

I say all the time that every moment we have to live our life is a blessing. So often I have found myself taking it for granted. Every hug from a family member. Every laugh we share with friends. Even the times of solitude are all blessings. Every second of every day is a gift. After Saturday evening, I know I truly understand how blessed I am for each second I am given.

I feel like I am overreacting about what I experienced. But I can’t help but be thankful for whatever caused me to make the choices that I made that day. My mind keeps replaying what I saw over in my head. I hope the victims make a full recovery. I wish I could shake this odd feeling from my chest. The feeling that’s reminding me how blessed I am. The same feeling that made me leave the Eaton Center. The feeling that may have potentially saved my life.

As she says, none of us know when or where we will take our last breath. Her time came less than an hour after tweeting how excited she was to see the Dark Knight Rises. Yet something in her made her publish that chilling story weeks earlier.

I may have never met Jessica but I have heard her words and listened to her story. And am grateful that she had a place to share them. What a huge blessing to have a way for her voice to go on and offer words of love and wisdom to her friends, family and community that are so in need of peace right now.

Jessica has shown me what a gift writing can be. It doesn’t matter how good or bad I am at it, or how many comma’s are out of place. What matters is that I honor those posts that have to be written. That I yield to that odd feeling I so often get as well. That I realize what a blessing it is to be able to have others hear my voice and listen to my stories.

9 News Image of Aurora Theater Shooting Victims

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Getting Over the Fear: Prepping Out of the Panic

Last month I was pretty sick. The kind of lay in bed all day long sick. I had a lot of time to watch TV. One afternoon while idly channel surfing I came across the show, Doomsday Preppers. At first, I was fascinated with this latest American Outliers creation of NatGeo.  What could possibly drive so much fear in people that they would bury shelters and stock years worth of toilet paper? So, I kept watching. And the more I watched the less bizarre these people seemed. If you strip away the sensationalism, they may actually have a point. I went from watching out of fascination to watching out of fear. How was my family supposed to survive TEOTWAWKI (The End Of The World As We Know It) when the SHTF (Shit Hits The Fan). Yes, these are actual acronyms in the Prepper’s vocabulary. I know because I became so paralyzed with fear from this show that I began heavily researching prepper and survivalists forums, blogs and books. THIS is what laying in bed idly watching TV turns you into!

In my freak out mode I decided to reach out to my friends and ask,”Pssst, am I crazy?” and the resounding answer I got was, no. It turns out that while no one wants to openly talk about it, most of my friends are worrying about this. Some are dealing with it by “prepping” (for the record I will refer to that term as the act of getting prepared for just about anything). Some are so overwhelmed at the thought of it that they go into random panic attacks, but almost all of my friends are thinking about it.

I was at the overwhelmed with panic attack stage. Then I decided to step back, take a deep breath, and break things down into what I needed to do to get rid of the panic I was feeling and get a little more prepared for an emergency situation for my family.

First thing I had to do was disengage myself from TEOTWAWKI scenarios. If I hadn’t, I would be digging spider holes (google it) all over my yard by now. I sat down with a list of all the crazy things these preppers are worried about-from EMP’s (Electro Magnetic Pulse) to Nuclear Attacks, to Economic Collapse and not that I don’t think any of those things couldn’t happen, I decided to worry about what is most likely to happen to my family first. What I came up with is: wildfires and tornado. Both are very likely in my area and these two provided the two scenarios I needed to prepare (prep) for: evacuation and staying put.

I am certainly not an expert and the internet abounds with amazing advice. I am just sharing what I have done so far so that if you are one of the many people in an absolute secret silent panic this may boil down some of the prepping ideas for you for you because it is overwhelming and can be expensive if you follow some of the links and buy everything they tell you to have.

Evacuation:

  • Bug Out Bags-there is no emergency site that won’t tell you to have one bag for person with most of these supplies. I went about it a little differently. I have one bag filled with necessary medical supplies and medications. Having a special needs family member means we have some equipment we would HAVE to have. It also has a Costco case of Power Bars. Use the kids backpacks from last year.
  • Car kits-I have premade, store bought ones in each car with heat blankets (I live in CO). I already had these. They are always on sale in the Fall in cold weather areas.
  • Case of water. Each car has a case of water in it. I grew up in AZ pre cell phone days. You never left without water so I was used to this one. If you worry about BPA this may not be a solution for you.
  • Plan on where to go. Last year a prominent neighborhood near us was evacuated due to a wildfire. Of course we offered our home to our friends in the area. All of them had family in the area though and were able to go there. But where would you go and can you get there on ONE tank of gas? Talk to your friends in other areas of town. Could you be disaster buddies? I’ll agree to be your host if you can do the same.
  • Cloud services: Have all of your important documents backed up onto a cloud service so you can get to them from any computer. Three to look into: Gmail, iCloud, and DropBox.
  • Pets: leashes and cat carrier are in an easy to grab area along with some long term chew toys to keep them calm.
  • Cell phone chargers in each car.

Experts say that in a wildfire evacuation you should be able to leave your house in 15 mins. The above is assuming you are going somewhere that will have electricity and water and that you won’t be on the road more than a few hours to your destination.

 

Staying In Home with No Electricity or Water:

If something happens to your area’s power grid, sewer system or water treatment plant or a weather related system cuts off your access to these things, you need to be able to stay in your house for an estimated 7 days without outside help.

  • Water. Everything revolves around the water. You need to have 1 gallon of water per person per day to DRINK. For my family that meant 35 gallons (including my mom) . We have 3 dogs and a cat so I planned a gallon for each of them as well, bringing our total for a week to 63 gallons. That is A LOT of water to store in case you are wondering. Costco sells their brand of  36 16.9 bottles for $3.50 and I picked up one of those each time I went. Basically a case=1 day for my family. Instead of buying all small bottles I got the 2.5 gallon jugs when they were on sale. It’s a lot of water to store so make sure you plan the space ahead of time. Don’t stress yourself out getting the water but make it priority.
  • Don’t have the recommended amount of water in your house? You actually probably do. In your water heater. Most hold 30-50 gallons! You need a garden hose and something to put it in. Watch this quick video on how to drain your water heater, write the directions down and put it somewhere safe in case you need it.
  • Now you have all the drinking water you need. But what about water for flushing toilets (if sewer system is OK) or washing dishes or hands? In the summer I buy a lot more soda for the kids. I have made a point to buy 2 liters this summer. Just wash those out with a little bit of bleach water and you have a great way to cheaply store tap water. There is no reason we couldn’t drink it as well.
  • Food. Depending on the season if you have a lot of freezer food you may need to cook it quickly to save it from going bad. Don’t open the freezer until you are ready and then be prepared to get it cooked. Do you have an alternate way to cook? Do you have enough charcoal if you had to BBQ for a week? 40 pounds is about right for a week.  How about a propane grill? A full propane tank can cook 3 meals a day for 10 days if you are careful. Do you have a spare? Cast iron pans are perfect for putting inside the grill if you don’t have a side burner.
  • solar lights for emergency use .97 WalmartLights. I think one of the best tricks I have seen is to use solar light. I found some at Walmart for .97. They would be just perfect for night time. Of course, we have flashlights and batteries.
  • NOAA Alert RadioI cannot say enough about how every home needs to have one of these and batteries to back it up! Your cell phones may not work. This is a reliable way to get information.
  • Weather. Think of your different seasons. Are certain areas of your house warmer or cooler than others? Does everyone have a sleeping bag with could provide extra warmth or polartec clothes? If you live in extreme heat did you know our grandparents would wet sheets and hang them in open windows to cool it down? Obviously you would need the water and security for that.

I am just getting started writing about all of this but I wanted to start with the very basic things you can do to feel like you are moving in the right direction and free yourself from the fear that the zombie apocalypse is among us and you don’t have enough toilet paper to see you through.

And if you are beyond these steps and looking for more solid, somewhat rational advice from a real prepper? I think Survival Mom is a good resource. Yes, she was one of the loons on the show. But I mean that in the nicest way possible. She has a great blog, Survival Mom.

I would LOVE to hear if this subject resonates with you. If just to make me feel like my crazy is in good company. Want me to keep writing on it? Or want me to talk to my doctor about getting on meds? 

 

 

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Is a Disney Cruise Right for Your Special Needs Family?

Before I left for the media preview Fantasy Cruise last month, I did some price comparison. While my husband, oldest and I have all cruised multiple times, I have yet to take our youngest. And I feel really badly about that. But to be honest with both the wheelchair and autism hurdles to overcome with him, I just have never been quite sure how he would do. Since he is such a Disney fan I always thought that his first cruise would probably work best on a Disney ship. Every time I went to book one though two things stopped me: the price and the fact that they always seemed sold out of the itineraries we wanted.

Disney cruises aren’t cheap. Comparing the cost between two fictitious similar itineraries to Mexico, Princess Cruises were close to $3000 less than the Disney counterpart & 3 days longer. 
;

Which is the point where I would take my hand off the ‘book’ button and walk away, dazed and confused to exactly why I thought that sailing on a Disney ship was going to be so much better.

I’ll be honest. I posed this question to several friends that had cruised Disney before. They all assured me that once I was on board I would see why they are almost always booked and why people were willing to pay so much more.

Fast forward to my cruise. I landed in Orlando and had the option to make my luggage magically appear in my room at the Animal Kingdom Lodge. Flying in from Denver pretty much necessitates an overnight stay somewhere in FL before cruising from Port Canaveral. The next morning, I again had the luxurious option of having my bags magically appear in my stateroom on board as I was transported to the port. Score 1 for Disney magic.

Disney Fantasy Ship at Dock in Castaway Cay

The check in process was flawless. Which has not always been the case on other cruise lines. Another point. We were on the ship as quick as you can say Tinkerbell. There was no mass crowding to get on board and the Disney crew announces each new group by name as they board.

The lunch buffet prepared in Cabana’s was the perfect place to get a bite to eat, get oriented and meet up with all my friends sailing with me.

I went back to my room to change into the bathing suit I had in my day bag and found my luggage already at the room. My deluxe stateroom with verandah was beautiful. We were only the second group to sail out on the Fantasy so everything was new and beautiful! I was thinking though how my tall teen boys would do in this room and my 6’8″ husband would feel about that Queen sized bed (which turned out to be SO comfortable just for me). Comfortable, deluxe bed is another big plus but no doubt, 4 people (all adult sized) would be cramped in here.

Which made me worry that if my family of four would be cramped here, how in the world would a room like this accommodate Carters wheelchair? Thankfully a friend traveling with our group was using an ECV and had booked an accessible room. She wrote that her room was perfectly able to accommodate her needs. 

While the group of friends I traveled with did not bring their families on this preview cruise, many others did and what I was constantly struck by was how often I did not see kids! You would have thought the ship would be crawling with lots of loud kids enjoying Disney. But the adult areas are well defined and while the kids are off having their fun, parents had plenty of time to be in the adult areas. Parents on board told me they barely had seen their children. Disney does onboard what it is best known for-it entertains little ones! Which give parents plenty of worry free time alone. Another huge score for the well defined, adults only areas to relax.

Cruise ship food can be a great place to taste mediocre food. Not on the Disney Fantasy. Each night dinner was a well coordinated ordeal. The lobsters were huge, the desserts fabulous and the staff attentive. Every dining opportunity was used as a chance to entertain and the fun in Animators Palace is not to be missed by kids or adults.

Some other nice touches that scored big points with me:
  • Fireworks. Disney is the only line allowed to shoot fireworks off the ship. One night, the Dream passed us and we stopped as they shot off a whole fireworks show for us, and we returned the favor by doing the same for them. It was a fun night and was interesting to see all the other cruise lines in the area pull in close enough to get a glimpse at the shooting sister ships.
  • The nightclub areas for adults had amazing themes such as London Tubes, Irish Pubs, and a Skyline that constantly changed scenery.
  • Soda is free and is easy to get. All of the food on board was above what I expected to find and allergy options were clearly marked

Another reason to choose a Disney Cruise is picking an itinerary that includes a day on Castaway Cay, their private island, which in fact feels much more like your very own private island. There was much to do and see on this Island but I enjoyed heading out to the adult beach and ordering an adult beverage, sinking my lawn chair in the ocean and relaxing away the day. It was just what I needed. Or maybe he was just what I needed…

sand wheelchairs on Disneys Castaway Cay IslandI was very pleased to see the large amount of sand wheelchairs available on Castaway Cay. I was disappointed in that this style would force an independent chair user to rely on someone else to push.

All in all I had a wonderful time on this brand new, beautiful cruise but sadly cannot say whether or not the extra cost would be worth this for a special needs family. I would need of see how they deal with kids with autism, how things like toileting are handled in the children’s programs. I would like to know how many child’s crew members can sign and how they deal with ‘runners’. Mainly I would like to see how inclusive their amazing programming is. That would determine if I could really recommend a Disney Cruise to special needs families. As it is now, I see how a typical family with kids under 12 could justify that all the Disney magic really is worth the extra money.

Here is hoping to another chance to bring Carter and really get the chance to see how this works for families like ours! 
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