Physical Therapy, Ahoy!

Last week I went to see my PCP, she wanted to check in and see how things were going. I explained that I was still having a hard time between my stomach and the pain from the fibromyalgia. I also told her about how my arms and hands will go numb sometimes and spasm. If I'm holding anything I drop it (thats why lately plastic cups and paper plates have been what I've been using). When I finished, she started looking at different medications, but was worried since most medications end up making my symptoms worse. So she decided to take a different approach and asked if I felt comfortable trying physical therapy. Since at this point I'm willing to try anything, I gave it the thumbs up. 

I'm a bit apprehensive, I've tried to do some yoga stretching, but sometimes I'm so tight I can't. I'm hoping a physical therapist might be able to give me some sort of idea on how to help my muscles carefully. If you guys could keep your fingers crossed for me, that would be much appreciated! I'll keep you all posted on how it works.

Till next time guys! 

P.S. I've still been doing my 100 days of happiness. If you want to check it out here's my instagram account http://instagram.com/lifechallaccept

100 days of happiness

Happy almost April everyone! 

Hard to believe we are almost into the 4th month of 2014, time is flying! A year that, for me, started with feelings of frustration and anger. Medications not working, not being able to really move or focus, my doctors not having any answers, not being able to drive, etc. It can be so hard when living with chronic illnesses/pain to see only the happiness and joy around us. We live in a world where pain (physical and emotional) is always present and it is a constant drain on not only our bodies, but on our psyche. We have our "good days and bad days (sometimes weeks)" since we live in a body whose health can change directions faster than a street racer. Thats why it's so easy for us to get stuck in a rut with no way to get out of the sadness and anger we sometimes feel.

And then on Instagram I began to see my fellow spoonies taking the 100 days of happiness challenge. Something that is most definitely not easy for a healthy person to do, let alone a spoonie. As I watched a few of my friends begin, it dawned on me how truly brilliant this idea was. You could be having one of your worst days and yet be happy, curled up on the couch having a cup of tea watching one of your favorite movies (Monty Python and the Holy Grail, thank you very much). Does it take away the pain, no. But instead of focusing on the pain, you focus on being happy with what's helping you get through the day. 

So, after talking with a friend on twitter who helped lift my mood, I have decided to take the 100 days of happiness challenge starting tomorrow! Everyday, I will try not to focus on the negative, but on the positive! Something that has made me happy each day. Will I still be in pain and having stomach flare ups, of course. It's what my body does and will always do. But, I'm choosing to not let it ruin my happiness...

Who's with me?    

Long time no write....

Sorry guys, (hides behind The Hulk) please don't smash me. I know its been two months since I last wrote. Time has flown by and I've been trying to stay positive considering my body has been giving me a run for my money. Between spending most of my days in the bathroom getting sick, being in constant pain, and dealing with "fibro fog" episodes its been hard to concentrate on anything. I've at least been able to do some tweeting and uploading photos on Instagram. It's easy enough to write little snippets about whats happening in the moment on twitter or uploading a picture and giving a brief description about it. But, actually sitting and trying to write an entire blog entry is no easy feat. A few times I would set up an entry, begin to write, then completely zone out and just stare at the computer screen for 45 minutes. Most. Annoying. Experience. Ever! *sigh and face palm* 

Hopefully soon, I'll be able to start this new form of natural medication, that both my PCP and specialist (not from Boston), have recommended. I'm not going to go into much detail about it yet. I'm still a bit skeptical, lord knows how many times over the past 15 years I've heard the phrase "Trust me, this medication will definitely help you"and then have it make things worse or not work at all. But, I will try and keep you updated on if it could really help those of us in need of serious relief from our chronic pain and chronic illnesses. 

I'm not going to promise that I'll be writing soon. Right now, I just can't guarantee it. But, I will promise that I won't wait two months to write. Even if it's two sentences long, I won't make you wait this long to know whats been happening in my crazy spoonie life. If you would like to follow me on twitter I'm @LifeChallAccept.  

Till next time folks!

Happy Belated New Year!

Hi Everyone! I can't believe we've already hit 2014, 2013 just flew by. I know I haven't written since December 10th, but I've been going through a lot. Trying new medications, having more testing done and coming to a (for me at least) big decision.

I've decided to take a break from my Boston doctors. They've just about given up on helping me, pretty much saying that they're isn't much else they can do. I've retaken tests (some hitting double digit times) and retried medications and I'm sick and tired of the round robin game they're playing. At this point I'm relying on my PCP (thank god she has been amazing, always there for me) and am going to change my strategy. For 15 years I've relied on Western medicine, being a good patient, doing exactly what the doctors say, verbatim. Yet it's gotten me absolutely no-where, except frustrated, angry, and placed me in constant pain and dehydrated because the diarrhea never stops. And they seem to want to put all the blame on me, like this whole situation I'm in is my fault, yea not going to take the abuse anymore. Might be time to call in the butt kicking ninjas…

Now since I'm choosing a different path, my mom and I have been researching Eastern medicine. We're looking into teas and massage and other things that might help. I'm not saying I'm giving up Western medicine completely, like I said I'm sticking with my primary and in April I'll go see my gastro in Boston. Hopefully by then I'll have found the proper combination of Western and Eastern Medicine to at least alleviate some of my symptoms. Not looking for miracle cures, just looking for a little bit of relief. My PCP and I even discussed some "alternate" forms of medication (I'll talk more about that in another post).

As for my fibromyalgia, since the Nortriptyline and Cymbalta only made me sicker my PCP is placing me on a muscle relaxant with liquid Tylenol for now. I start it on Monday, we'll see how it all works out.

So for 2014, I've made the decision to not let the medical field push me around or make me feel like this is all my fault. I'll take into account what they suggest but in the end if they try me on something I've already tried before and it failed, not trying it again. I'm going to take control, I'm tired of feeling helpless. Alright butt kicking ninjas lets go kick some ass!

Fibromy…WHAT?!

Had this all written and my computer froze, GAH! Gonna try and write it all again:

Last week I got the call from my doctors office, another official diagnosis to add to the list: fibromyalgia. As frustrated as I am, its nice to be able to find an answer to some of the pain and discomfort I've been feeling. It was a fellow spoonie that I met on twitter who wrote me an email after reading my blog.

"Ummm, Kate could you possibly have fibromyalgia?" 

I looked at the email and re-read it a few times. Was it possible? I started to research the symptoms of fibromyalgia online. As I began to read my jaw slowly began to drop. Holy Moly Batman! I had about 90% of the symptoms listed but, I was worried to say anything. I didn't want to seem like a hypochondriac, having people believe it was all in my head (something any spoonie can truly relate too). I felt like I was stuck between a rock and a hard place. The last time a doctor had pretty much said I was making it up and should see a psychologist, it nearly broke me. I didn't want to take that chance with my PCP or even my family. So I kept the information tucked away. 

About a week later I went to see my OBGYN for my PCOS. I've been seeing her since I was 15 and trust her more than any other doctor. After she listened to everything I was experiencing she looked at me for a second and then asked,

"Kate, have you thought about talking to your primary about the possibility of having fibromyalgia?"

I was stunned. In a weeks time two people both had come to the same conclusion. I couldn't brush this off anymore. I made an appointment with my PCP for that same week. I printed out my research, highlighted all of the symptoms I was experiencing and brought it with me. I walked into the office feeling nervous, not really knowing what to expect, hoping that she would take me seriously.

I waited about 15 minutes and she came into the office asking me how I was holding up and how she could help me.

"Actually, I wanted to talk to you about the possibility that I could have fibromyalgia."

I handed her my highlighted papers and began to go over everything that I had been experiencing for over a year. Symptoms that I was brushing off as just a side effect of my chronic stomach illness. She listened and nodded her head, and than began to look at some information on her computer. She stayed silent as began to press on certain points on my back and arm. 

"Ahhh…ow," I hissed and flinched. When she finished she had me sit back down on the chair by her computer. 

"Okay, so I really think you hit the nail on the head Kate." She went on to explain that she would have to do two blood work tests to be 100% certain. One was to check my thyroid levels since they hadn't been checked in 6 months and the other was to see if it could be related to arthritis (it runs in my family). "They most likely will come back negative, but we just need to be certain. In the end, I think your right Kate, you most likely have fibromyalgia." 

So I had the blood work done and waited for the results. And last Monday I got the call, "The tests came back negative Kate, I'm giving you an official diagnosis of fibromyalgia"

The next step is to try some different medications to see if they'll help me out. I'm hoping that they could at least calm down the pain I've been in. Maybe help me get more that 2 hours of sleep a night. 

There are still many questions as to why my body works the way it does, but I'm happy to have another piece of the puzzle figured out. The more answers you have, the better it is. It helps you understand why your body reacts the way it does. 

Does it make the pain and discomfort any better? No. 

But at least you know your not going crazy.

The "What If" Game

The "What If" Game is something everyone does, not just those of us with a chronic illness. It's a natural human response, we want to make sure that we have thought of every possible contingency to a situation. We want to be in control of the situation. Most people might tweak there original plan or just say to hell with it and just go into a situation head on.

I find, however, that I'm a text book over thinker. The "what ifs" just keep coming. They're typically related to my chronic illness or food allergies, especially when I'm going somewhere new or to a place I haven't been to in a long time. When you don't have control over much in your body and life, you take what you can get. 

For example, this weekend is a "girls" weekend; just me, my sister, and my mom. I'm wicked excited, we haven't had a weekend like this in almost two years. My sister lives with my grandmother and normally there isn't someone to give my sister a break so we can go out. But this weekend she has coverage and we actually get to have some much needed "girl" time! Huzzah! 

We were trying to figure out what to do for both Saturday and Sunday and my sister suggested we do something we normally wouldn't. I'm always hesitant when going to new places. I don't know where the bathrooms are (a must for me) and when its a ways from home other concerns come into play.  What if I "almost" make it to the bathroom? What if my sugar drops? What if I'm hit with a stabbing pain I don't see coming? What if I pass out? Etcetera, Etcetera. 

As my mom was watching me closely for my reaction, my sister finally decided that Saturday we'd go to the Boston Aquarium and then Quincey Market. I could feel myself slowly begin to panic as my brain went into overdrive. It's one thing when I'm going up to Boston for a doctor's appointment, thats completely different scenario. Its normally just my mom with me and she knows our doctor's visit routine. My sister doesn't, and if I end up having a serious flare up she'll be disappointed. 

"Will that be okay Kate, can you handle it" my mom said softly, most likely knowing what was going through my mind. 
"Sure," I squeaked, "we'll figure it out". I didn't want to disappoint my sister, she looked so freaking excited. 

With a small smile I picked up my iPad trying to look occupied as I began to play that horrible "what if" game. With each possible scenario getting me more and more worried. I finally took a deep breath and screamed "STOP!"(inside my head, I didn't want to freak out my family) 

'What is the worst possible outcome,' I asked myself.
'Get wicked sick and need to go to the hospital,' was the answer
'Well, think of it this way, at least BWH is like 10 minutes away. All of your specialists are there as well as your medical records. Your mom and sister will be right there with you. They know its not your fault, its just your body. Take a deep breath and relax...'

Deep breath taken and 'Okay, lets do this!'

If I get super sick, we'll just turn around and go home. I'll bring an extra change of clothes in case of super sweating from a hot flash or not making it quite in time to the bathroom. I'll have a small bag with goodies set aside to snack on throughout the day. All of my meds will be in my purse along with my medical info. Everything will be fine. Just treat it like a doctor's appointment and be as prepared as you can be. 

That stupid "what if" game. It can quickly take a fun trip and turn it into a tornado of pessimism  and self doubt. It's okay to make sure your prepared for possible hiccups, but you don't want it to ruin your time or even make you reconsider going and doing something fun. When you are around those who love you, they'll understand if you need to take break or need to turn around and head home. There's not much us spoonies can do about it if our bodies have other plans. And not going out when you have the chance will make you slowly go insane! 

I'm not going to let my worries ruin my weekend. I'm going to enjoy this little trip and take a hammer to any "what if" thoughts. Peace out pessimism! Sayonara self doubt! Say hello to my little friend, Thor's hammer! BAM! 

Holy crap a new post!

Hi...*Hides behind counter* I know its been over a month and no updates. I'm so sorry, things have been very stressful between health and other happenings. I had to put all my energy (which isn't much) into trying to help with some other situations. Lets just say its been a taxing time. 

So….my doctors (both my surgeon, gastroenterologist, and PCP) aren't entirely sure whats going on with my system. All three are confused and and have stated that my situation is incredibly unique and complicated. And since they aren't sure whats going on, we are starting back at the beginning...square one. I had to deal with some Hulkish anger when I heard that & I couldn't even SMASH anything. This past Monday they had me do a lower intestine barium drink test (it's the 6th time I've done it, and it doesn't get any easier). It made me super sick and I'm still feeling horrible from it.

Coming up, I have two doctor appointments next week and then another test in Boston in December as well as another two doctor appointments in Boston the day before Christmas Eve. Hopefully there won't be any surprise appointments, but you never know.   

One thing I have been able to do is meet more of the spoonie community on twitter and gain their support and understanding to my chronic illness. Not that I don't get incredible support from my family and friends, I do. But its nice to have someone truly understand what I feel on a daily basis. The anger and frustration that I feel when I wake up and instantly have to run to the bathroom to get sick or having to deal with a "foggy" brain. The jealousy as I see other people able to go out with friends, date, go to work; hell being drive more than 5 minutes away from home! The pain I feel on a daily basis and have to hide from the world behind the mask I have taken 14 years to perfect so that no one is the wiser. The guilt I feel each time plans need to be changed because my body has other plans. These are just some of the emotions and situations I feel and deal with. No one can truly understand it, unless they are actually going through it. The amazing people I have met on twitter are not only supportive, but most who follow me also know what I'm going through  because they also have been going through something similar themselves. We support and encourage each other, talk about what we are dealing with without feeling guilty or judged. Tweeting with these awesome people and being embraced by the spoonie community has given me some peace of mind. Even if I feel alone, I'm not. There are others in the world who understand my frustration, my anger and sadness, even my struggle to find my footing in this universe. 

As I get ready for the next steps in trying to find out what is going on with my body, I know that I have an amazing support system. For my family, friends and my fellow spoonies thank you for your support and not giving up on me! 

I hope to have another post up tomorrow, fingers crossed I can do it! 

For those who aren't sure what a Spoonie is, here is a link to a great article by Christine Miserandino that I highly recommend reading to further understand The Spoon Theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/