Dec 25, 2010

Surviving the Holidays with POTS

I hope all of you had a very Merry Christmas!

The holidays can be a stressful time of year for anyone, but especially for someone struggling with a serious illness.  You know you're supposed to be happy and cheery, but when you're in pain or having trouble breathing or some other disabling symptom, it's pretty hard to get into the holiday spirit.

This was my first Christmas season with POTS.  I was supposed to go to my in-laws house, about 30 minutes away, for Christmas Eve dinner.  Unfortunately, my breathing was so bad yesterday, on top of severe kidney pain (new diagnosis this week on that issue - see below) and a sore throat from a cold I caught from my mom, I was in no mood to be a passenger in the car - since riding in the car seems to make some of my symptoms worse (especially the vertigo).

My in-laws are wonderful people and they are very understanding.  They always throw a huge Italian feast on Christmas Eve.  I had prepped my own gluten free/lactose free high protein, low carb mostly organic dinner - it was a pretty awesome menu and it passed the "this is gluten free?" test for tastiness.  My husband and I skipped the Christmas Eve party and I ended up laying in bed crying every time a family member called to check on me - since I was so bummed that I couldn't be part of the festivities.

I felt like a dope crying over one missed dinner, but to me, it represents more than just one dinner.  It represents where I am at this point in my life - feeling sick and often unable to do what I want to do.  My husband did his best to cheer me up and we had some of the fancy food I had prepared the day earlier.  He put on the Charlie Brown Christmas album with all those Vince Guaraldi songs.  We are big Snoopy fans - our den is turned into 'the Snoopy room' for Christmas, decorated with 52 Christmas themed Snoopys and counting.  For some reason, this music made me extra sad and I started crying again.  I kept thinking, what the heck is wrong with me, why is a Peanuts song making me cry?  I think it just brought to mind all the happy Christmas memories I have from prior years, when I wasn't sick.  I was longing for my pre-POTS life, something I try not to do because it only makes me dwell on what's I missing out on, rather than the more positive "what CAN I do today?", which is essential if you're going to cope with the emotional impact of POTS. 

So to distract ourselves form the crappyness of the situation, we played some old school Nintendo on the Wii (the original Super Mario Brothers!), listened to some music that didn't make me think of Christmas (G. Love & Special Sauce always cheers me up) and went to sleep watching the Season 2 of the Golden Girls DVD we rented from the library (which always gives me happy memories of visiting my grandparents in Florida as a kid).  We also talked to our families as they were celebrating and everyone agreed to a "Round 2" of Christmas Eve festivities when I was feeling better.

Christmas Day was tough, but I fared much better.  My family went to my aunt's house in NJ, about 3 hours away, as they do every year.  I couldn't sit in the car that long having as many symptoms as I was these last few days, so my husband and I stayed home in NY.  I ended up on the phone with my sister as she was driving to NJ and I burst into tears when she said she'd miss me not being there.  It's like someone can look at me the wrong way this week and I start crying, and within seconds I'm mad at myself or being such a wimp for crying.  Not to mention, that crying seems to worsen my breathing and definitely burns my eyes more than normal - probably because all of the salt pills I have to take to keep my blood pressure up. 

My in-laws were supposed to go to another relatives house that they go to every year, but instead, they were kind enough to bring Christmas dinner to our house, along with my 2 sister-in-laws, our 2 nieces and our nephew.  It was such a delight to be able to spend time with all of them and not have to drag myself somewhere in the car, and also not to have to stress out over planning everything since it was a last minute decision for them to come over.  I'm sure if we had planned for everyone to come to my house in advance I would have worked myself to exhaustion trying to clean the house perfectly and cooking up a fancy dinner.  Instead, I decided to go with the flow.  I chilled on the floor and the couch most of the time, but we did manage to convince my mother-in-law to try the chicken flying game on Wii Fit - too funny!  I got a sore throat from talking too much, which happens to me these days every time I have a conversation with someone that lasts more than 2 or 3 minutes.  I ended up having one bad breathing attack towards the end of the evening (because I tried to play a Wii game standing up - my fault!).  

Overall, it was the most relaxed and enjoyable Christmas Day I've ever had.

Hopefully New Year's will go off without all the crying, but New Year's last year was the last time I went out and had fun with friends - my last hurrah before I got sick.   Unfortunately, January 2nd will be my one year anniversary of being sick, so I'm not going to get mad at myself if I cry that day.  We've rented Season 3 of the Golden Girls in anticipation of that day.

About the kidney pain if you're interested:
I've told at least 4 or 5 doctors about this horrible pain and soreness in my lower right flank, just below my ribs, but above my hip.  It's been happening on and off for the last few years, but much more often since I spent 2 months in the hospital this summer.  Some of them poked around (with my flinching every time they hit the 'sore' spot) and told me everything seemed normal.  I went to my local walk in clinic earlier this week because I thought I was getting an urinary tract infection and that is something you don't want to have over the holidays when the pharmacy and doctor's offices are closed.  It hurts like hell, and for people with delicate immune systems - like me and like many POTS patients - you have to take every possible infection seriously, because a little infection could turn into a big one if your immune system doesn't do it's job properly.  I am also extra cautious when it comes to kidney issues, because my dad lost his kidney to an infection when I was in 7th grade.  Luckily, he still has one kidney left that is healthy.  Sure enough, the doctor at the walk in clinic did a sonogram of my kidney and found a simple cyst about 1 cm in size (which he said was pretty common for someone my age and harmless) and he found that the pelvis of my kidney (the kidney pelvis is the part of the kidney that collects the urine just before it flows down to your bladder) was inflamed and that urine was backing up into my kidneys.  I am going to call a urologist first thing Monday morning, because this is exactly what caused my dad to lose his kidney to an infection.  It may be no big deal, but I still plan to have it checked out by a specialist, rather than rely on the walk-in clinic doctors assurance that "it's probably nothing."  Damage to your kidneys is not "nothing," and considering my family history and all the pain I've been having right where my kidney is, I have to get it checked out.  I  know that nerve damage related to POTS and other autonomic disorders can cause problems with the valves that control the flow of urine from your kidney to your bladder.  If that valve is damaged, it can cause urine to back flow potentially harming your kidneys.  I'm crossing my fingers that he's right and it is "no big deal."

1 comment:

  1. I have just began reading your blog and decided to start from the beginning. We have a lot in common. I've currently been diagnosed with Sjogren's Syndromme, POTS, Vasovagel Syncope, Meniere's Disease, and Atypical migraines. I need to continue to read to discover what happens with the kidney pains you had but I had the same problems as a little girl. It took a long time to figure out but I finally noticed after drinking gatorade it would get worse. I went through so many doctors and we didn't learn much. If I drank gatorade a couple of days in a row I would have those pains come right back. I saw that you had said something about hydrating with electrolytes so I'm mentioning this just in case. Now that I have Meniere's Disease I won't touch gatorade due to salt content so in the end I suppose it has worked out. I look forward to continuing to read your blog. Hopefully I catch up soon.