Sunday, July 21, 2013

Why I Bought a Wetsuit for my Health - the Saga

UV rays are the enemy of lupus, Sjogren's and yep, even Migraine patients. So what does a person do when going to the land of the midnight sun for a cruise vacation? Cover up.

Really cover up.

One of the things I miss the most is swimming. I swam competitively from the age of seven until I was 17. I was actually pretty good too :) I own an in-ground swimming pool we haven't even opened up for the year since around 2005. I look outdoors at the diving board and slide and yearn for the days when we would swim as a family nearly every night, friends and neighbors right along with us.

For this trip, I decided I was going swimming, no matter the cost. Well, so long as I could do it without causing an autoimmune flare. So, I bought a wetsuit.

I began looking right after Christmas.  After several weeks of looking, I had an idea what I thought I needed - a triathlon suit. These suits are made of thin material in varying thicknesses depending where the suit is on your body. The thicker the suit, the warmer the suit. To make it flexible so you can actually move those arms to swim and expand your chest to breathe, there are panels that have very thin material. The suits cover you from neck to ankles and wrists - well most of them do anyway.

Because I needed something to keep my core warm (I do NOT hold my body temps well and suffer fairly serious Raynaud's) and to keep 100% of the UV light out, I chose the full body version. Coated with a rubber-type coating, it was the only thing I could find that would completely protect me from the sun and fluorescent lights sure to be present on the boat.

Despite the suit, my head, neck, hands and feet will be exposed to whatever light is present. This will likely limit the hours I can swim to late at night when the sun is at its lowest. I'm okay with that. Maybe that will keep me from scaring the kids sure to also be present on the boat, lol.

To cover my head, I've decided on a do-rag. Purple of course :) I can't stand the feeling of a hat on my head because the allodynia from the 24/7 Migraines makes me so sensitive that washing my hair hurts. I do have a cap I'll be bringing just in case there is a certain amount of time I can stand wearing it, but will save it for our excursions - whatever those will end up being.

Sunscreen is a must, but for a person who is allergic to most sunscreens, this is a challenge. I have used a particular brand in the past, but it is not waterproof. The only sure way to keep the sun from damaging my fragile cells and triggering a mass immune response, is to be covered. This means zinc oxide. I have the option of gloves and socks too, but I'm going to try to avoid using them if I can.

Add my bug-eyed sunglasses, and I am sure to be quite a site for people to stare at. On one hand I don't know these people, and it really doesn't bother me. On the other hand, I also know that it will bother me.

Each time I have to make a concession to do something most people consider normal... each time I see a family member or friend roll their eyes at me... each time I look in the mirror... I realize that I really am sick and it is harder to *not feel* the differences. Oh, and those eyes that look at me when I have to be dressed in a get-up like this. Ugh.

Once I figured out the type of wetsuit I needed, the search was on for the exact make and model. Who knew there were hundreds of these things out there to choose from - and each of them different!

I wanted the expertise of professionals, which I got. I wanted someone to just guide me and tell me "Buy this one, it's the right one for you"  but didn't get that until May.

Great! Now I finally know which one to get and I go to order it, only to find they have none in my size. I pray that the backorders will come through and I'll be able to get my perfect wetsuit (which also happens to have purple accents!)

No matter where I looked and how long I waited, I had no luck with the suit of my dreams. So I began the search all over again.

Eventually I found a pro that told me he knew just what I needed. When we looked at it, it too was sold out.

So he showed me another.  It wasn't sold out, but was an additional $150 more than I'd allotted to spend and it was a thinner suit.

When I placed my order, it too was sold out.

What the heck?!

I didn't have time to Migraine, get ready for a trip AND start over from scratch for a third time. So I began looking very deep for the last suit and was amazed to finally find one.

Once again, I placed my order. I emailed the company and thought they answered none of my other questions, they were in California, so I hoped ovenight shipping would work.  I wrote them again and told them so long as I had it by Saturday I thought I'd be okay, as that would give me sufficient time to return it for another size if needed.

Friday at about 4:15pm I receive a call telling me they goofed and didn't have my size. So, they wanted to upgrade me to a thinner, better suit.

But I don't want thinner, I want thicker!

I tried to look it up online, and found virtually nothing, probably because it's a newer model.

Faced with an impossible Migraine and an impossible decision that needed to be made within the hour, I agreed to the upgrade and called her back. Great! They can still get it to me by Saturday because I've paid for overnight shipping.

A few minutes later, another phone call. *Oops* they can't get it to me overnight because we don't have anyone to deliver overnight packages.

Are you kidding? Sadly, no.

I asked them to pro-rate my shipping back to 3 day since it would be Monday before it arrived, but they couldn't.

I wanted to pull my hair out and vomit all over the phone just for good measure. This just shouldn't be so blaming hard.

"Yes, please send me the suit, just so long as it arrives by Monday. That won't give me any time to get another size if this is wrong or won't work for me, and my trip will be ruined, but oh well."

So, on Monday my wetsuit is finally to arrive. It's my third choice, cost me an additional $150, isn't but half as warm as the original, but at least it's getting here!

Stay tuned for more of the wetsuit saga, lol.

Sunday, July 7, 2013

Migraine and Chronic Illness: Preparing for the Vacation of a Lifetime

When I was about 5 years old, my father went to Alaska. When he came back, he gave me a little stuffed blonde seal pup and promised that someday he wanted to take us all there to experience some of what he got to see on his trip.

It's my 30th anniversary, and my parents' 50th anniversary, and we're going on a cruise to Alaska. Finally!

When I say "we" I mean my parents, my hubs and both our kids with their new spouses, and my brother and his family (which includes 3 kids under 8 - one autistic and mentally challenged). To make the trip easier on my brother, my parents chose a cruise specifically for families of autistic kids.

Our situation is unique, and this brings forth some unique things to have to deal with in the planning and execution of such a trip.

  • I am putting together a current list of my medical history - medications, surgical and accident history, allergies, medication sensitivities, physician information etc. I have some strange and complex issues going on and it's vital that I have this information with me at all times in case something goes wrong.

  • I am extremely light sensitive. My Migraines make living without incandescent lighting, or going out doors without my special sunglasses, miserable. We're going to be there during the *midnight sun* so I'm trying my best to plan for the trip by making sure I have ALL my sunglasses with me - just in case.

  • My autoimmune issues mean that UV rays increase my antibody production, which attacks the organs and tissues in my body and causes a flare of disease that makes me very sick. As a result of this, I said I could only go if I had a cabin that at least had a window, as it is likely I'll be spending the bulk of my time there and at least want to be able to see the environment around us. It's not a perfect solution, but hopefully it will make me feel included and allow me to feel like I'm actually in Alaska and not just along for the ride. The noise I'm pretty sure I'm going to be exposed to with the sheer number of kids on board, is also an issue that I'm hoping will be made easier with our cabin. 

  • I am working with my headache specialist to be sure that I am well-equipped with a written rescue plan if I'm caught off guard while on the boat. Cruise ships are not known for having fabulous medical services, and I could be in serious trouble if my medications fail me. I don't know yet what all this will entail, but I want to have a mag IV setup as well as injectable rescue meds. Going to the ER in this case could potentially mean a helicopter ride to the local hospital and the loss of the trip as well as finding a way back home again. I need to be as prepared as I can.

  • I have been working for the last 7 months to plan ahead for maximizing my preventive therapies to maximize the time I'll be able to participate in activities. Things didn't exactly work in my favor where this is concerned - I basically am starting from scratch on my Botox right now - but it's the best we can do.  I'm all about optimization right now, so no sense crying over spilled milk.

  • We're planning our excursions this weekend. It's vitally important to me that my family not be held back because of my chronic illness, so I kind of forced them to get together and sign up for the trips they really want to take. I haven't signed up for anything yet, because I really don't know what I can do at this point, and I may end up having to spend a good deal of the shore time in my room to avoid the sun. This again isn't ideal, but crying about not getting to do the things I've dreamed about for 4 decades is really not helpful. (I admit, I've done my fair share the last week I'm afraid)

  • We're planning how to pack all my medical supplies and equipment so that I don't have another run-in with airline staff over my need to have my things on board with me vs in checked baggage. It's going to take cooperation between all of us to make it happen safely, but thankfully my family knows how important this is and I think we'll be okay.

  • We are taking a larger plane to get to the port in Seattle. This will help stack the deck in my favor that there will be fewer problems getting my medical supplies on board, having the room to stow them and having more restroom choices should I need to make an emergency run for the border. 

  • I'm trying to concentrate on the things I'll be able to do while on the trip, instead of those things I'll be sitting on the sidelines for, or missing altogether. I just CAN'T get caught up with being sad about what I want and need to make peace with being happy with those I can do.  This is a daily struggle at this point. Sometimes, even moment to moment. Those of us with chronic illness know full well that this happens though, and often this is how we get through each day of our lives.
There may be even more things that we do to maximize our experience on this wonderful trip. I'll write about them as they come about. In the meantime, maybe some of my readers have suggestions for me that I've not yet thought about??

This post is my response to the July 2013 Headache and Migraine Disease Blog Carnival.