Hey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas.
I’ve been going to therapy lately, and my therapist gave me a task for the next month. Be uncomfortable.
I’m uncomfortable with the idea of being uncomfortable. When she said it, my skin started to crawl, and I was all “yea, I don’t think that’s gonna be a thing”.
A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.
Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.
What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.
But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.
Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me. But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.
Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.
I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.
BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.
- Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
- Dry and itchy eyes
- Sore throat or a “sick voice”
- a heavy head, it feels difficult to keep it held up
- It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
- Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
- Dry skin on my face and hands
- Constant headaches all over my head, unlike a cluster headache
- light headedness
- difficulty with breathing
- everything is slow, my walking, my talking, my thinking, everything
- fever or hot flashes
- I also feel very cold and get chills often, regardless of the hot flashes
- heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
- Sore back between my shoulder blades
So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.
Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.
Hey guys. What’s up? Not much here.
That’s a lie.
I am one busy mofo. Hopefully you can tell that by the fact that I have not updated in over a month. …….bad blogger.
So heres the updates!
I am working hard at my new job, which I love. I feel fortunate to have it everyday and even more fortunate that my whole medical history is not an issue.
I am working my ass of for Girls With Guts right now. We are in full steam for planning our 2013 Fall Retreat. Holy crap you guys, I am so nervous but at the same time SO SO SO excited. If you’re a lady with IBD/ostomy/jpouch, I really urge you to check it out. I think we have an amazing weekend planned and frankly, it would mean a whole hell of a lot to me if some of you came. So many of you have been so important in my IBD path, and it would be nice to be able to thank you in person. If you are having a problem affording it, we’ve got scholarships! Deadline is the end of July so act fast! Also I swear that wasn’t a commercial, but its just a HUGE part of my life and I really want people to come because I think it would be really helpful and be a great resource.
I am speaking at conferences! I’ve been invited to speak at two conferences this year (I’ve declined one) but I was also asked to come speak and mentor at the Michigan Girls Scouts of America leadership camp. In the giddy 12 year old me, I am really really excited about this. I was a Girl Scout as a kid, and I remember having mostly fond memories (until I got kicked out, but that’s another story), and I remember it being a really positive part of my life. There is something inherently exciting about speaking to a group of young girls who are motivated and excited.
I’m back to my neurologist to start a new drug for my Multiple Sclerosis. This is sort of a touchy subject for me because I feel happy and healthy and I don’t want to be on any medication. None. I take NOTHING now and its so fantastic. But by not taking anything for MS, it’s not necessarily helping me, more or less just letting me throw my oblivious ignorant fit about being med free. So now I’m stuck between this adult rock and hard place where I want to just enjoy being healthy for the first time and a long time, and throwing a tantrum about taking meds because I DONT WANNNNNNAAAA. Getting back into medical mode is a little difficult. Doing testing again is obnoxious. But alas I am an adult and not an unruly 4 yr old. My new med won’t be a flavorful Flintstone vitamin but hell, there are medical breakthroughs everyday. You never know. Remicade could become a maple syrup you slap on pancakes once a month. Humira could just be the active ingredient in a new energy shot. A girl can dream.
I ran the Tough Mudder. It was 12 miles and 20-some military obstacles. While I’d like to be all, “CRUSHED IT”, the reality is that I did it, I finished, but I’m sure it was not pretty. It was 12 long miles of mud, mud, electrocution, mud, walls, the coldest water I’ve ever been in, mud, mud, and the norovirus. Apparently in the Michigan course we also had the added benefit of a gastrointestinal bug. Lucky day! But get this. I think I’ve put enough Good Gut Karma into the world that I didn’t get it. Dude, I know. Days after the race normal, healthy, coloned people were dropping line flies due to IBD like symptoms. I, however was not fazed. I wonder if I gave all of Tough Mudder IBD. Suckaz. The summary is that I didn’t train enough (per usual) and it was hard but not impossible. Honestly, my body and its abilities keeps amazing me. It may not be the hottest bod, or the strongest, but its been through a lot and now I have a fancy orange Tough Mudder head band.
But that’s pretty much it. I hope guys are well. I have some more stuff in the cue for postings soon so check back and I swear to not disappear again.