Eating my way through Europe

I'm so glad to have a break from school as I needed it badly. However life has other plans and I had to fly back to Chicago last minute due to a family emergency. It's been a heavy couple of weeks full of challenges and since my levels were stellar last month I was worried about risking that. I needed to be there for my family though so it was good to set up some boundaries and take small moments for myself while dealing with my surroundings.

I then had a scheduled several week trip through Italy and Spain IMMEDIATELY afterwards which was a pain in the ass, but I did it. It was hot for 15 days...like in the 90's hot. So I kept an eye on my body for any signs of exhaustion and made sure to hydrate and eat. Now- when in Italy and delicious food is staring me in the face, I had several moments of weakness. Ok, TONS of moments of weakness. I felt bad but was also not beating myself up for enjoying some food I dont get to eat in Sweden ever.

That said I'm back the foods I normally eat so hopefully my checkup later this week doesnt end up printing out "tapas and gelato" instead of platelet count numbers. But I can't guarantee it.

When you're in Wes Anderson's cafe, you gotta try at least a little croissant! 

Heirloom tomato caprese salad with fresh pomegranate juice. I knew the cheese would be a risk but luckily it didn't upset my stomach. Maybe things are just fresher in Italy and Spain?

Gut Feeling

photo from The Daily Beast

Yes yes it's been a while...so I'll just jump right to it!

Kids, drinking copious amounts of strong Swedish filter coffee every day and coming home exhausted from class and having lots of French bread as your main sustenance....will NOT be good for your health.

I had a relapse back in November where my levels sank further than the Titanic. The reason being I just wasn't minding my health, and especially my diet. SO back to the hospital, and on Prednisone I went! The Swedish medical system is pretty efficient, the main problem here for someone like me is that they BARELY have any experience with ITP. So that wasn't comforting. I've learned to be a big advocate for my own health here, since I've been thoroughly educated on my illness from my years being treated with the amazing doctors in Chicago.

The best part about getting treated in Sweden is the national healthcare means I pay around $40 for a hospital or doctor visit. Bloodwork is free, and medicine is dirt cheap. If only I could just have the US doctors it'd be perfect!

That said...I made an accidental discovery when I got a bad stomach bug in January (if you eat at shady Chinese restaurants in Berlin you're just asking for trouble). Since I wasnt able to eat anything besides gluten free toast, rice, and soup- my platelet levels shot WAY up. That and the coffee and bread-induced relapse, have led to backing up a theory about my gut/stomach causing my major flare ups.

So I've kept gluten-free (ok- 85%...I cant resist cinnamon buns), and non dairy. I've also introduced lots of fermented items like Kimchi and Sauerkraut. I'm still trying to work WITH my stomach now but the results have been great, and my levels so far have been at a good number. 90's, and even a 155 a couple weeks ago!

Let's see how long this progress holds up. In the meantime, try Kimchi...it's amazing and I've developed the taste for it so much I just eat it solo now.

Moving Abroad mid-illness or, Take A Chance on Swedes

I'm still all relapse-y (currently 37k), but wayyyy back in December I started the process of school applications. I've decided on a program and will be moving to Stockholm in a couple weeks. Besides looking for a living arrangement proving to be as difficult as they say it is (Sweden has a housing crisis), I've had to prep myself for moving somewhere where they dont know my medical history, and most importantly, finding a good medical support system ALL over again (Challenge). 

I notified my hematologist months ago about the potential move, and thankfully she reached out and got me a referral over there. Besides that, I am still a little confused about how the insurance works over there (Challenge). I will have a residence permit which would allow me on the national healthcare- which I have NO idea how it works. I can only get my id card over there so I have to wait. Another...challenge- is trying to guestimate how much medication to take. I'm not on Pred at the moment but I need to take some with me in case I relapsex2 before I can see my new doc, which I suspect will be a while until paperwork kicks in.

Another thing to take into account, is that now I'm about to start intensive study/projects- while on a relapse. The past 2 years when I was stable it would have been no problem. But now that I get a bit fatigued easier, I know I might have to bring it up with my classmates. This is gonna take some serious Jedi mind control on my part to really take care of myself, remember to eat well, exercise, etc. I am excited for all the clean food over there. There are way more restrictions so the food quality of better, which is good news for someone with an autoimmune disease.

FRANKIE SAYS RELAPSE

I jinxed myself with that last post didnt I...

After being steady for a couple years, a month ago my levels plummeted down to 17k. The kind of numbers I had when I was first diagnosed several years ago and in the hospital. When you live with an illness you get to know how your body works (and when it isnt). I started having bruising in places not normally seeing blemishes, such as my arms. The bruises on my legs didnt go away after a day or two as usual, they stayed for over a week. So I made an appointment with my hematologist and the CBC confirmed what I already suspected. I also suspect the bad stomach issues I had weeks prior kicked off a response which caused the relapse, and we're working on that now. Especially since there's been a connection with H. Pylori and ITP.

There is good news however (for now). Once again I am also back on the good ol' Prednisone, which I have renamed Satan's Vitamins™, and the week after I was 17k I skyrocketed to 120K. Weird I know. It's going down again as we lower the steroids, which is to be expected. 102K last week, so we'll see what this week brings. 

I will say one thing, this time I am so much more prepared. The first time diagnosed I was terrified since I had no idea what to expect. But I know what ITP is, I know what Prednisone is like, I know what infusion and bone marrow biopsies are like, and so on. The mystery of what happens has become less mysterious, and more about taking care of myself- especially since I know I can only control how I feel and not what my platelets do. So I'm eating well (gluten/dairy free), making sure I take moments for myself throughout the day (especially at work) to check in with how I'm feeling, politely declining social things that may take too much energy, and remembering that it's the Satan's Vitamins™and not me. PLUS, I'm still making plans for this year. ITP is not going to put everything on hold like it once did, I will simply live with it, as I always have.

So the best thing, really, is to relax -while I have this relapse.

Escaping the Downer Bubble

 

Updates! Well, there arent many. The year before last my hema told me I would just see her when I would need to. This was because appointment after appointment would yield the same result, levels from 90-110K (mostly 90's). This is great, but no remission. As I write this I have a couple tiny "fingerprint bruises", as I call them, on my arms and legs.  Still-  I'm happy to have been stable in the same range for almost 2 years. 2015 will be year FIVE of living with this illness, and so far I haven't let it alter my plans the way it used to. I think like anything life-changing event, you adapt.

I used to avoid making big plans altogether. I'd get all Debbie Downer on everyone and say things like "well you never know what can happen" or "whats the point I have bad luck" (I used this one alot).  Cut to 5 years on and you haven't done much because of fear. SO, I've recognized the patterns that my "Sick Person Mentality" has been a challenge for me. Just because this happened and changed alot, doesnt mean I should treat my future like it's Jake Gyllenhaal in Bubble Boy. Thus 2015 will be about believing in plans again! We'll see how I do.

 Trying not to treat my life this way

Let's get Physical!....or take a nap

Wow has it really been a year since my last post? I guess on the ITP front not much has changed. I am now in my third year and since last summer I've been bouncing between the 80's and 90's. I owe it to the Rituxan I guess...was really hoping for a remission but not this year it looks like.

Well, on the health front, last summer my "regular" doctor suggested I gain muscle mass again, since for 2 years I was either not allowed to do pretty much anything physical or when I was able to I was too fatigued to even try. SO, after getting the hematologist's ok, i signed up for...gasp!horror!...a gym. AND a personal trainer to kick it off for 2 months. Since there's no way in hell I would have known what to do with all those machines.

Never thought I'd be a gym person but i started to really enjoy it once I learned how to use the machines and integrate my health/diet to really make sure all that work wasn't for nothing. It's easy when you are paying for a trainer, you make sure you go to your sessions. After that was done I had to keep it up on my own. Fast forward to summer...it's been really hot here and I've gotten rather sluggish again.

So, once again I'm trying to get back into the swing of things. Little by little. I've gotten "baby" bruises these days due to the exhaustion from the heat, so I'm pacing myself. I've taken a couple swing/rockabilly dance classes which I LOVE. When I was on the prednisone in my 1st crappy year of ITP I took tap clases, which were so great since it was "low impact" exercise and really enjoyable.

SO...if you are looking to get into/stay in shape in a different way than yoga (or a gym) while navigating the murky waters of an illness, I suggest taking a light dance class of some sort if you can.

Make it Through the Summer

There's an old Chicago band called The Chamber Strings whose song "Make it Through the Summer" seems to be my anthem these days. I've been dealing with being ill AND navigating the murky waters of a break-up. A break-up which was due to mostly my illness and his not being able to handle it well (it could be said, nor I). That said...this summer has been discovering what "me time" is all about again after spending way too much energy on someone who wasn't really supportive of my life post-illness.

I was worried about my levels (the break up happened ONE WEEK before my first cbc's in 3 months! jerk) but alas, they had stayed pretty stable. Last month? my levels even went up by 30k. Even after I have been pretty slack with my health by drinking etc. No bueno. I get tiny bruises once in a while, but the other day I got this bad boy:

It's illness-related as  ITP bruises always look like I took some dark lipstick and smudged a color sample on myself. Maybe one day I'll do a "Know your bruises!"post.  Anyway a year ago I would have been in tears, but I'm about all-cried out these days and now I just monitor it and make sure nothing else pops up. Next CBC is in OCTOBER. My hema is nuts, but I'll trust her judgement.

Let's all make it through this summer.