Have Disease, Will Travel

When I informed my doctor that I was going to Mexico, you could say he was less than enthused. My health is incredibly complicated and the average medical professional hasn’t even heard of my disease, so any traveling has an element of risk to it. Traveling to another country where the available health care is questionable at best and healthy people regularly get sick takes things to a whole new level of risk. It’s easy to become intimidated by it all, to allow the what ifs and potential dangers to overwhelm you. Those of us with bone marrow disorders have fragile health and we must take things seriously. But we must also continue to live and enjoy the health that we do have for we never know what’s around the corner. So with that in mind, we put a plan in place and I am happy to report that my travels were absolutely wonderful and I returned a happy healthy girl. I wanted to share how we handled my health issues for this trip just in case anyone out there is in a similar situation looking for answers. And right away I want to preface this by saying this isn’t for everyone and certainly talk things over with your doctor before making any plans.

First up, travel insurance. There are a bunch of different companies out there selling travel insurance with a wide variety of plans. I used this site to compare the plans and ended up choosing Global Alert. I primarily focused on the medical coverage, making sure I chose a plan that had a large amount available for health insurance and emergency evacuation, as well as a plan that covered pre-existing conditions and would give a full refund if my health were to make it impossible for me to travel. Thank goodness I didn’t need to use this but it gave me an incredible peace of mind knowing it was there. I did however need it to cover the night at the resort that we missed due to our flight delays so it turned out to be a wonderful thing to have all the way around.

Next I picked a condo that would be extra wonderful to spend time in if I wasn’t feeling up to being terribly active. Some days I just don’t feel great and I doubted that being on vacation would change that, and I was right. I had one day that I just felt crappy so we spent the afternoon hanging out in our private pool (every bit as amazing as it sounds) and it ended up being one of the best days of our trip. I didn’t feel like I was missing out on my vacation stuck in a hotel room so it made feeling less than stellar no big deal. We tend to go go go when we travel so our room hasn’t really been a priority in our past travels, but it is now something that I will take into consideration when planning trips.

I spent time with my doctor making plans for our trip as well. We planned a blood transfusion two days before I left so that I would have plenty of blood for my travels. Since I’ve been needing transfusions every six weeks or so we knew that I would need one somewhere around that time. It also ensured that I wouldn’t be lagging because of low blood counts. They also sent me on my way with a bunch of masks for the plane rides. I’ll admit I didn’t actually wear them. But I had them ready to put on if I happened to be near anyone couching or sniffling.

While in Mexico I was extra careful in regards to food and drink. Puerto Vallarta is one of the better destinations in Mexico in regards to water filtration so that certainly helped, but I avoided fresh fruits and vegetable and stuck to the bottled water, even when rinsing my toothbrush. Better safe than sorry, especially with a compromised immune system. I also avoided anything too terribly adventurous. With such low platelets, the wrong bump or tumble could turn into a big problem so I erred on the side of caution in that department. In general, I just played it safe and took my health issues into consideration with pretty much everything I did. I didn’t let it ruin my trip or cause me to live in fear, I just kept it in the back of my mind and did my best to make responsible decisions. At the end of the day, I don’t think it cost me a second of fun ๐Ÿ˜‰

So for any of you actually reading this whole boring post, I hope it helps should you be making travel plans of your own! At the end of the day all you can do is make a plan and hope for the best. Traveling may be a little risky for us sickly folk but I believe it’s a risk worth taking. Having a disease complicates our lives for sure, but it also brings with it an appreciation for the time and health that we do have and serves as a daily reminder to make the most of it. For me, that means traveling as much as I possibly can because it is one of my favorite things to do in life. Some day my health may not allow me this luxury so I intend to soak up every ounce of it that I can and pray that day never comes.

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Identity Crisis

Dear blog world,

I haven’t forgotten about you. I’ve just been crazy busy. And a bit unsure about what I’m doing with this little blog of mine. I started this blog to share updates about my health and to share what life looks like when you can’t have kids and you’re dealing with a serious disease but are still managing to enjoy life anyways. But somewhere along the way that all seemed to get a little lost. I got caught up in sharing my projects and pictures. Not that there’s anything wrong with that, I just started to feel a lack of purpose in it all. But every time I think of tossing in the towel and giving up on blogging all together, another person comments on the post I wrote over a year ago about my port and I feel once again like I need to keep going, that I do have something to add to the conversation. So I’m going to try to get back to my original purpose, to keep things a bit more real and not just share crafty projects and pictures. There will be those as well for sure, but I feel like if I’m going to keep going here it’s going to need to be more than just that. I’m not making any promises but I will do my best!

Acceptance

As I journey along this road of life with a chronic illness, I realize more and more that it is a journey of acceptance. There have been big things to accept, like the fact that I will never have children, and there have been small things to accept, like the fact that intense roller coasters are now off limits. There are days when it is easy, and there are days when I struggle horribly.

This summer has been a summer of acceptance for me. Accepting that my health is not what I want it to be, accepting that I can’t do everything that I want to do, accepting that some days I just don’t feel well and there’s nothing I can do about it. Hardest of all though has been accepting that I simply do not have the energy to own a horse any more. It took months of struggling to find energy to ride a few times a week, of feeling guilty for using up any energy I did have to ride, of feeling like my life was slipping from my grasp, to finally say enough. My pile of projects sat untouched, my scrapbooking supplies gathered dust, my bike filled with spiderwebs. I simply had no energy leftover. So I finally admitted what I had known for months, that it was time to find my sweet Lily a new home.

There’s no way around it, it was incredibly hard. I love that girl more than I can say and I miss her like crazy. It was the right choice, but that doesn’t make it hurt less. But choosing to sell her meant more than just giving up my horse, it meant the acceptance that once again my life has been changed by my disease. I do my best to ignore my health problems most of the time, to lose track of the bad days, but at moments like this there is no ignoring the fact that I am sick and that it is changing my life.

Accepting the losses that life with a chronic illness brings, both big and small, can be a painful process. Sometimes it’s an overwhelming pain, sometimes just a dull ache in the back of your brain. But it is also brings a strength that you never knew you had, makes you grow in ways you never would have imagined. I wish I was a normal healthy person and that I had never even heard of PNH or aplastic anemia, but if that were the case I wouldn’t have half the strength I have today, and that is worth every moment of struggle.

And I will put this third into the fire, and refine them as one refines silver, and test them as gold is tested. They will call upon my name, and I will answer them. I will say, โ€˜They are my peopleโ€™; and they will say, โ€˜The Lord is my God.โ€™โ€ Zachariah 13:9

 

Sharing

I’ve spent a lot of time over the past few weeks thinking about what I want this blog to be. When I started it almost a year ago (oh my gosh how has it been that long already?!?!?!) I wanted it to be a place to share my journey through my medical issues, my pictures, as well as my life as a childfree girl who happens to love scrapbooking. I think I’ve done a pretty good job on the scrapbooking front, an even better job on the sharing of pictures side of things, but not such a great job on the medical end. It’s been harder than I expected to share my experiences as a “sick person”, to open up and share the difficulties that life with a disease presents. But more and more I find that I gain so much from hearing other people’s stories, that I am consistently inspired by those that do open their hearts and share. Between blogs, forum posts and books (most recently, Michael J. Fox’s latestย Always Looking Upย which was excellent) I have found a wealth of inspiration from others fighting their way through the same medical world that I occupy and felt the need to jump in and do a better job of sharing my own story as well. So I’m making a new goal for myself to share my heart more openly and more frequently. It may take me awhile to open up so bare with me, I am a work in progress! And if you’re just here for pictures of my dog, don’t worry, I won’t be the slightest bit offended if you skip over the personal stuff ๐Ÿ˜‰

I’m gonna start off towards my new goal by sharing the poem that begins Toni Morrison’s new book Home, which is also excellent so if you’re looking for book recommendations you now have two ๐Ÿ™‚

Whose house is this?

Whose night keeps out the light

In here?

Say, who owns this house?

It’s not mine.

I dreamed another, sweeter, brighter

With a view of lakes crossed in painted boats;

Of fields wide as arms open for me.

This house is strange.

Its shadows lie.

Say, tell me, why does its lock fit my key?

Let me just say that I adore Toni Morrison. What English major doesn’t? But this poem may be my favorite thing she has ever written because it so eloquently puts into words the way I often feel about this life as a patient. Don’t get me wrong, I love my life more than I can say and I am incredibly blessed. But the constant doctor appointments, the incessant waiting for test results to determine the course of my next few months, the waiting, wondering and worrying, the constant questioning of what comes next, those are all things I could do without. In many ways my life is better than I ever imagined, but it is at the same time a life filled with challenges I never dreamed I would have to face. There are times when those challenges feel insurmountable and it is at those moments when I wonder why this lock fits my key.

Lately

*A few Smash book pages to shareI’m sorry these look so blurry. If you click on them they are just fine but for some reason they aren’t clear in the post. Sometimes WordPress fails me…

* A friend and I headed downtown for a super fantabulous girl date the other day. We visited the Minneapolis Photo Center, which had a great new exhibit, but is also one of the coolest buildings I’ve ever been in. It is everything you think of when you think of a restored industrial space; wood floors, exposed bricks, wood beams, huge windows with amazing views, awesome doors. It is such a cool space.We followed up our loft lust with dinner on the new rooftop patio at the Uptown Cafeteria. Awesome patio, awesome views, awesome food. When we were in the Bahamas I had conch fritters and fell in love. Since then I have been searching for something similar to satisfy the craving. But all that has changed now that I’ve had the crab fritters at the Cafeteria. They are DELICIOUS! I cannot wait to go back for more!!! It was a perfect girls day out with some much needed city time.

* So far the bone marrow biopsy recovery is going better than ever before. Seems like I was right when I predicted it would be the best biopsy ever ๐Ÿ˜‰ I give all the credit to my sweet new anti gravity chair and the awesome care I’ve been receiving from the hubs. He rocks. I’m certainly not 100% yet but I’m much better off than I’ve ever been at this point before which is making me incredibly happy! Not to mention that recovering so far has included dozing in the sun while my handsome hubby fixes the lawn. Nice.

*My creative mojo seems to be back in full effect and I am chomping at the bit to make some fun new crafty goodies for around the house. I want to turn the wedding photos I have in our bedroom into photo canvases like this.I want to make one of thesefor the bedroom as well, I’m thinking with lyrics from Train’s “Marry Me.” I want to dress up my photo wall in the living room by adding some color. My photowall is made up of thrifted frames that I spray painted black so I want to pick up some more frames and maybe find some cute prints in the thrift stores or come up with some things I can make myself. I’m thinking for sure a map and then who knows from there! Between Pinterest and my imagination the possibilities are limitless!

Well, that’s about all that’s new with me lately. Basically just a lot of getting creative on my computer while my back heals ๐Ÿ™‚

Overdue Update

I figure I’m a bit overdue on a medical update around here seeing as I started this blog to keep everyone updated in the first place. But in the interest of full disclosure, this is going to be boring so… You’ve been warned. I’ll try to keep it as brief and simple as possible since my crazy disease just seems to confuse everyone anyways ๐Ÿ˜‰

After a year and a half of wondering whether we should try stopping the soliris (the treatment for my PNH), we finally decided to do it. We just decided that we needed to know if it was helping or hurting once and for all. A year and a half is a long time to wonder if you’re doing the right thing so it was time to just figure it out.

We decided to taper off the soliris with two smaller doses and it has now been 3 weeks since I’ve received any treatment. My hemoglobin has been going down since we started tapering it off which was why I had to have a blood transfusion last weekend. I have a bone marrow biopsy this Friday and my hematologist is going to consult with my specialists which should provide us with the final pieces of the puzzle. I figured things would probably get worse as we went through this grand experiment so I’m not terribly concerned with all of this. Just something to get through in order to get answers. Assuming my marrow looks normal we will probably either try procrit (a bone marrow stimulating drug that I was previously on with mediocre success) or resume the soliris treatment.

It’s all been a bit of a pain in the rumpus but I am really happy that we are going to finally have a better idea what’s actually going on with the PNH and soliris. If continuing with soliris turns out to be the right plan, I will be just fine with it because I will finally know that it’s working and not making things worse which has been our fear for way too long. I’m not exactly loving all this time spent in the doctors office when it’s finally nice outside but it is so worth it to finally have answers.

As for my bone marrow biopsy, I hate them, which I’m pretty sure is the standard emotion for having a hole drilled in your pelvis. And thanks to my enormous milk consumption, I have super bones so I tend to have more pain from them than the average patient. But I have a plan this time so I’m pretty sure this is going to be my best bone marrow biopsy yet (if there is such a thing…). I’m getting an anti gravity chair this week which I’m pretty sure is going to be the most comfortable thing ever for hole in pelvis recovery, and it’s going to allow me to be outside instead of stuck on the couch all day. And my “assistant” Justin is all ready to come to the barn to tack my horse up and assist me at the barn everyday. I’ve discovered that riding is one of the most comfortable things I can do after my biopsies and it actually helps me heal faster so I get back on my horse as quickly as possible. They really aren’t kidding when they talk about the healing properties of riding horses!

So that’s the news for now, told you I was going to bore you to death. Lots of waiting and watching and hoping that we’ll be able to come up with some answers out of all of this. I tend to be a rather perplexing patient so we’ll probably never understand all the weird stuff my lab reports say is going on, but if we can come up with enough to make good decisions, I will be a happy camper.

Things I’ve Learned This Weekend

1. I possess a certain, dare I say superhuman, strength and am pretty sure The Avengers will be calling me soon. Okay, that may be a tad exaggerated but I did manage to wax my car twice while in need of a blood transfusion which is pretty darn close.
2. Blood transfusions are long and boring. Nearly three hours per bag of blood. Thank goodness for iPhones.
3. It is difficult to look at the bags of blood and not think of all the times you’ve seen vampires enjoy them on tv. Six hours is a long time to wait for Stephan, Damon or Edward to jump out and steal your blood.
4. If you don’t know who I’m referencing in #3, trust me, you’re not missing much.
5. Arriving in the transfusion room after noon is a bit like being the new girl arriving mid class. And when the only chair available is the one on the very end facing everyone, well lets just say I now have a much greater sympathy for the new kid.
6. Getting a blood transfusion on a Saturday though? Amazing. A private room with a tv to watch World’s Cutest Pet on and a surprisingly comfortable hospital bed have convinced me that from here on out when I need a transfusion I will be “busy” every day but Saturday and Sunday. I’m sure my doctor won’t get suspicious…