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/

Frustration to the max

I know, I've said that I would be better about blogging and here we are about a month later and I haven't written a darn thing. My excuse, I honestly haven't had any energy lately. The surgery didn't work at all. I was hoping for a little relief and yet here we are, sans relief. I can't even begin to explain how having constant bouts of diarrhea is crappy (pun intended). Not only do I have those bouts but every once in a while I'm throwing up on top of it. Some days I just want to curl up in ball and not get up.  I know I said I was going to be optimistic and stay positive, but lately I have really been feeling down and a bit depressed. 

The one good thing is that my new nutritionist came up with a diet that could possibly help. I'm not going to hold my breath, but if it helps even a little I'll call it a win. This new way of eating that I'll be starting is based off the FODMAPs diet. Now normally this is a diet used by people with IBS or a stomach illness that is similar, but in about 75% of people who follow the diet see a change in their symptoms. It takes about 6-8 weeks to see any real change and I just officially started yesterday, so we will have to wait and see. 

At this point, I'll try anything before medication. The next step my doctors want to take is putting back on already-tried-and-failed medications. Some of these medications I've tried three or four times, I don't see how trying them again will help and it really kind of annoys me. It's like "we cant find the problem, so lets start from square one and see it all fail again". Sorry not interested. 90% of those medications caused more problems than actually help. Not putting myself through that crap again, thank you very much. 

So, I do promise to try and be more productive. Half the time I mean to write and end up just staring at the computer screen. I get so tired that I can't even conjure up a well thought out sentence, let alone an entire blog post.

Here's to hoping for better days!

Until next time

More Fun News...

Well, I thought I would give a little update since my last post. Things haven't been going as well as expected. My dumping episodes have increased to about 6-7 times a day. Because I haven't been able to keep the proper nutrition in my system, I've lost a lot of weight in a little bit of time (about 15 lbs. since my surgery). That was a bit more than I originally expected in only five weeks. It's a bit unnerving.

Now on my last post I talked about having thrush. Since then I've gotten an infection that has caused blisters to form on my lips and under my bottom lip and above my top lip. My doctor thinks its in relation to my immune system not being up to par from my chronic illness and still healing from my surgery. It's really painful and uncomfortable and can take a while to clear up depending upon what type of infection I have. We are trying one method (an antibiotic cream that I put on the blisters 3 times a day), but if that doesn't seem to be helping in the next two days I have to go back and we'll try another script.

So with everything going on I'm a bit frustrated right now. Things are not going quite as I'd hoped, but it is what it is. I'm seeing my surgeon next Monday since things aren't going so well (I originally was going to see him Oct. 2nd and he still has me seeing him then too). I'm hoping that we might at least be able to bring the dumping episodes down from 6-7 times a day to 4-5 times a day. However, I'm also in complete understanding that could just be a pipe dream at this point.

Trying to stay positive, and hoping this cream helps my very painful blistering infection. Fingers crossed!

Thursh

Yesterday I noticed that my mouth had started to crack around the corners. Uncomfortable, but nothing to really be too worried about. I slapped on some Vaseline and kept on going threw the day. I woke up this morning and my mouth was killing me. I looked in the mirror and guess what folks....I have thrush, UGG!! 

Now for those who don't know, thrush is caused by an infection from bacteria known as Candidiasis. Normally our body is able to keep this bacteria balanced within our system. But, when your immune system is weakened it can effect how much is grown, and when too much grows...Voila! Thrush. 

It should be pretty easy to get rid of. I called my doctor's office and since I've had it before, they should (hopefully) be able to write up a script and fax it over to my pharmacy before quitting time. For me, I prefer the lozenge method of getting rid of thrush. Much easier on my system than the liquid and cream medication doctor's can also use.

So here I am, watching cheesy (yet awesome) movies on the SYFY channel and trying to keep my mind off of the added pain from my mouth. One more thing I have to worry about, blah! If you guys want any extra info about Thrush or how to treat it I'll have two url underneath here that you can move over too. One is from WEBMD and the other one is from the Mayo Clinic. If you guys have any ways of treating thrush write it in the comments section, I would love to see if there are any real good homeopathic ways of getting rid of this. Until next time!  


http://www.webmd.com/oral-health/guide/dental-health-thrush

http://www.mayoclinic.com/health/oral-thrush/DS00408

I'm Back!!!

Holy Crap! It has been forever since I've written here and I can only say to those who follow me that I am truly sorry. Things just became so overwhelming that I had to take a break and focus on trying to stay positive, not become depressed, and get ready for my surgery. I can't believe that three weeks since  surgery day have flown by! Needless to say, I'm so happy to be on this side of things and like I said to my surgeon before going under, "No regrets". 

I'm still having dumping episodes, but I knew already that this surgery was to try and help reduce the amount of episodes and severity, not cure me. There isn't a cure for what I have and there isn't a guarantee this surgery will work. I'm having my good days and bad days, but one constant is that the horrible burping and flatulence that I would get after having a meal has gotten insanely better! For three weeks in, that alone is a huge relief. I'm a little nervous about how my body will react when I start adding in actual food since right now I'm on a mostly liquid diet. 

For my next few blog updates I plan on going over things that I experienced and learned while on my little "leave". I'll talk about having my original surgery date rescheduled less than 48 hours before to have a test for a rare disease, going in and coming out of major stomach surgery, the different protein shakes I've tried, putting food back into my diet, and what my next chapter in life has in store for me. 

I still have a long way to go, lots of healing, changes and decisions that need to be made. But as always, I try and accept the challenge!  

Next Steps...

Chronic dumping syndrome...not  a fun problem to have at all. It's embarrassing, frustrating and tiring to have. In my case, its on the more severe side. No medication has helped and the next avenue is surgery. It's been incredibly frustrating and the latest addition to this mix, a feeding tube, has had me hyperventilating multiple times. (Little brown paper bag, you are my friend)

I am so not a fan of this. It took me two months just to wrap my head around getting a port placed in my chest, and thats under the skin. This thing will be seen coming out from beneath my skin! And it might be a permanent fixture! (Cue freak out... OMG, WTF!)

This Friday we meet with my doctor to finalize most of this and set a final date for next month. There is only a 10% chance this surgery will help in anyway...but its a chance I have to take. I'm only in my 20's and if I don't do something soon, things will only get worse. If it doesn't help, I'll have to feed myself with that freaking feeding tube till they come up with something better; which could essentially be never, Oy Vey! Getting gamma radiation and turning into a giant green rage monster keeps looking like a better option with every turn!

So here I go, somewhat ready to face this next steps head on (with my trusty brown paper bag of course). Wish me luck people!

Movie Snacks!

One of my favorite things to do is go to the movies, especially as of late. It's a nice way to get out of the house, but still be fairly safe since all your doing is sitting for a couple of hours to enjoy a cinematic adventure. One thing that stinks is if you have food allergies there aren't many snack options. Now I know, that there are normally signs that say, "No Outside Food or Beverage Allowed". But when you can't eat anything from the movie snack bar and you want something to nibble on while enjoying your feature film you might need to get *ahem* creative.

While the options (even for those of us with allergies) are numerous, here are five suggestions that I think make great movie snacks for either at home or in the theater:

1) Hot Air Popcorn: The main problem with movie popcorn is brought already popped and "seasoned". When you don't know where food is manufactured its not worth the risk eating it. To be safe, pop your own at home and jazz it up anyway you like. There's nothing like sticking by the old standby; when you think movie, you think popcorn!

2) Chips: Both of these options can be found meeting any type of allergy requirements. The options are endless now-a-days, from vegetable chips to lentil chips to regular potato chips. Whats nice is it gives your the crunch your looking for if you don't have the option of eating popcorn.

3) Nuts: If you aren't allergic to them, nuts can be a great snack at the movie theater. From peanuts to pistachios they're a healthy snack that will allow you to get some protein while watching your movie. On a side note, I find that if you have a stomach problem, take it easy on how many nuts you eat at once. It can cause some serious stomach distress...not something you want happening during the flick.

4) Allergy Safe Candy: If there is a type of candy that you like to eat (mine is Surf Sweets Gummy Bears, they're freaking delicious!) grab a pack and bring it with you. Trust me, it'll be so worth it if you have a sweet tooth.

5) Vegetables: If your feeling like changing it up and going really healthy, fresh vegetables can make a great snack. Especially for parents who might not want their kids experiencing a sugar high during or after the movie.

So those are my movie theater snack suggestions. If you have any other suggestions please feel free to leave a comment and I will definitely add them to my list. For now, I'm going to turn off my computer, grab a snack and enjoy some Iron Man!  

Enjoying time with friends...

Last Friday was such an awesome day, I was able to meet up with a couple of my friends that I haven't seen since November. We met up at UNO's, had a drink, and caught up on how each of us were doing. It was so nice to feel somewhat normal. Not to say that I wasn't a little nervous going out, especially since I was hooked up to my hydration bag (the stupid cord gets stuck on everything, *sigh*). Plus I just never know when I could get sick; nothing can damper a fun time like being stuck in the bathroom for half of the outing. But sometimes, you just gotta say, screw it, enjoy the moment and try to take precautions before hand.

1) Rest before going out: Whether its a nap or just relaxing while watching a movie, make sure that you reserve some energy before going out, especially if you have gotten sick during the day.

2) Pick a place you'll be able to enjoy yourself: Be sure to pick places that you'll be able to really relax and have a good time (I try to pick places where I know the outlay of the building, more importantly, the loo).  It can be your house, a restaurant, the movies, etc. As long as you know you'll feel safe, make it a suggestion to your friends as a place to meet.

3) Wear something comfortable: Especially if you have stomach issues wear comfortable clothes. I know, especially us girls, we like to dress up. But instead of wearing clothes that could actually cause you to be in even more discomfort, dress up the comfortable clothes with wearing some jewelry, a little make up, and doing your hair. You'll be able to relax, zenify, and enjoy your company a lot more.

4) Bring some candy or sweets: In case your sugar goes down, always bring some type of candy. It's easy to pop in your mouth and let it sit under your tongue and get absorbed by your body quickly.

5) Eat after you go out: Eating can be a trigger for some of us with chronic stomach illnesses. Because of that, it might be important to try and eat a meal after you are out not while you are out. This is something only you can decide depending upon your situation.

I had such a fun time with the girls, and I can't wait to be able to go out with them again!

Leaving My Port Accessed

So a few weeks ago when I was getting my port accessed for hydration therapy, my nurse let me know that everytime your port is accessed there is an increased chance of infection. Yikes! Because of my vasovagal response to needles I had to wrap my head around the idea of keeping a needle in my chest. When the opportunity presented itself the day of my colonoscopy/endoscopy, I asked them to leave the port in so I could get an idea of what it would be like to leave it in for at least 24hrs since I had hydration therapy the next day. I learned two very important things:

                       1. That sleeping with a bra on is a necessity when you are a female. It keeps the port     from being accidentally tugged if you are someone who moves in your sleep.

                       2. My skin has a sensitivity to tagaderm bandages. Only 24hrs of wearing it and I was developing blisters and was itching the area like crazy.

(Below are pictures of the accessed port, if you are squeamish  don't scroll down)

The following week I left the port (called a gripper needle) in from Tuesday to Friday. It was a bit bulky (as shown below) and could been seen through whatever shirt I was wearing. I definitely felt uncomfortable when someone would take a double take. Since the tagaderm was causing a reaction the nurse used an IV3000 bandage instead. It's still itchy, but there were no blisters forming (Whew!). I also had to use paper tape to keep the port line in place because of my sensitive skin. It kept falling off so I had to replace it a few times.

It was a good thing that my mom had the week off from work. She helped keep my mind off of how uncomfortable I felt both physically and mentally with port accessed.

After the first week a younger nurse came and brought with her a lifeguard needle. It's not as bulky and is a bit more comfortable than the gripper. She was saying that younger people like them better because they don't show as much and they are a bit more comfortable with the gauze thats placed under the black plastic (as shown in the picture below). The lifeguard still shows through my shirt, but not as bad.

The pink tape is something that I had found when trying to search for a medical tape that was latex free and easy on sensitive skin. HY-pink medical tape was something that I found and absolutely love! It's doesn't itch at all and holds the tube in place. If you have sensitive skin, this is so the medical tape for you!

So right now each week for four days I have a needle in my chest and a tube hanging out. I'm getting better at dealing with it. Trust me, I have my moments. My brother has nick named me Iron Man since the day I had the port put in. So when I start to feel a little squeamish I close my eyes and try to think, What Would Iron Man Do? Be chill, make a sarcastic comment, and go create a kickass Iron Man suit. Okay, two outta three ain't bad.
 

Exhaustion

I feel like a broken record. I keep saying that I'll be better about posting here and on my twitter account, and then I'm down for a week. Oy vey! I'm not trying to make excuses but most of these little breaks can be blamed on pure exhaustion. I loose most of what I eat, which can take a chunk out of my energy level, plus my sugar crashes constantly. It makes it very hard to concentrate, focus and write something that makes sense. To top it off, I don't get much sleep, I'm lucky to get three hours, it's frustrating. Ugg! I wish The Flash would come and give me some of his extra energy!

I am going to try to be better about posting on my blog, tired or not. Wake up brain, its time to get moving!

6 Things You Should Have for Colonoscopy Prep Day

In my last post I said I would make a list of things that I think are pretty important before having a colonoscopy done. I know some of the items might seem like common sense, but when you aren't feeling good and/or have to travel and stay at a hotel the day before the procedure, things might be forgotten (I know that from experience). So hopefully this will help and make someone else's experience a bit more bearable.

1. Soft toilet paper~ Especially if you are planning to stay at a hotel or if your family leans towards the stronger TP, have soft toilet paper handy. Most hotels have toilet paper that has the same softness as sandpaper. To save your poor bottom from being sanded down like a piece of 2x4; purchase 2-3 rolls of that pillow like TP. You'll be very happy that you did...trust me. 

2. Preparation H Wipes/ Cream or Tucks Spray~ Even if you have the soft TP, your derriere with be quite raw from all of the cleaning your colon will experience. It might burn at first, when you use the wipes or spray, but after a few minutes it will cool the area down and make it easier to sit down.

3. Large container to mix medication with fluids~ The prep that I had to do consisted of taking two Dulcolax pills and three hour later taking a 238g bottle of Miralax and splitting it into two 32oz bottles of Powerade (No red dye is allowed). It was much easier pouring the Powerade and Miralax into a 64oz container and shaking until the Miralax was dissolved, instead of hoping the powder won't make the Powerade overflow.

4. Measuring cup that clearly indicates 8oz~ Instead of just guessing about how much 8oz is, it helps to be able to clearly measure an exact amount.  When you start the second Powerade you'll be so tired that your main thought will be one thing; "Please, let the Hulk come out of no where and SMASH this container so I don't have to drink it", not  "When I measured 8 oz before it was about right here."

5. Something to entertain yourself in the loo~Whether its a book, tablet, phone or gaming device, keep something in the bathroom within reaching distance of the porcelain throne. You'll be spending a lot of time in there and it will help to try and keep your mind occupied on something else other than what you are experiencing.

6. Last, but not least...air freshner~ I don't think I have to really explain why... but since not many people carry gas masks, it'll help both you and anyone else that might have to use the bathroom breath a little easier.  

Crazy Week

I know I haven't written anything in a week...YIKES! And after I promised I was going to be better about posting (shakes head in shame). The reason I was MIA was because last Monday I had an endoscopy and a colonoscopy. Because of having dumping syndrome plus having to do a colon cleaning, my sugar dropped pretty low. Knowing that it was a possibility that my sugar would drop, my parents and I drove up to Boston on Sunday. We stayed at a hotel that was about 2 minutes away from BWH, which ended up being a God send. Around 2:30 pm we arrived at the hotel and around 3:00 pm I had to start the cleaning medication.

It wasn't an easy time, I couldn't get enough into my system to help boost my sugar level. I had originally brought my computer so I could write blog posts about my experience and maybe help someone having it done for the first time. I went to write my first post and an hour later it was a tiny little paragraph of words that made no sense. At that point I closed my computer, grabbed a pillow and curled up into a little ball while watching The Big Bang Theory.

For the most part my body seemed to get a schedule down. I would in the bathroom for about 2 hours straight come out for about 10 minutes and be back in the bathroom for ANOTHER 2 hours. I was only able to sleep for about an hour, thank goodness for my iPod. I watched almost every Marvel Comic superhero movie known. By the time we were heading to the hospital I was tired, low on sugar, and fairly irritable. When my doctor came in they knocked me out with some anesthesia and preformed the procedure.

The procedure, the ride home (my dad was trying to beat Red Sox traffic, so we didn't get to stop like we normally do to help my motion sickness), plus my chronic illness made me very sick for the entire week. The first day I was actually able to eat something and not dry heave afterwards was on Friday. Thank goodness for my IV infusions, they were able to get me some hydration.

So here I am, a week later and at least getting my feet a little more under me than last week. My next post I'm planning on making a list of things that are very important to have when going through the cleaning prep for a colonoscopy. Some I didn't realize until it was a little too late.

For now, enjoy the day my readers!

Boston Trips and UTI's

So I haven't written in a while and I'll explain for those few who may be reading my blog. I have an upcoming double test in Boston (endoscopy/colonoscopy) to be safe that there isn't anything else that could be adding to my chronic illness. Because I tend to fight back without meaning to when I have procedures like these done, they have to give me anesthesia. Therefore, last Thursday was a road trip with my dad up to Boston to speak with the anesthesiologist. For most people, that drive takes one and a half to two hours. For us, with needing to constantly stop for bathroom breaks, and traffic we tend to leave about 4-5 hours before any appointment at Bringham and Women's Hospital. The appointment (which was shorter than the actual wait to see someone) went very smoothly and I'm all set for April 8th.

Friday I ended up going to the doctor's right around where I lived because I had noticed on my trip Thursday I was developing a UTI. The one thing that really sucks is that I can't take antibiotics orally. So Friday morning, I went into my doctor's office and had to get two antibiotic shots in my butt. Now anyone who has ever had an antibiotic shot knows that it feels like their injecting really thick molasses into you. Its painful and can leave a decent bruise. Most of the day Friday, I couldn't sit comfortably in any chair, which made it a very long day.

I'm planning from now on that I will be much more diligent in writing my posts, this whole thing is still a bit new to me. Now, I plan on making my lists for everything I need to make sure I bring everything with me Sunday to the hotel in Boston.

 

The Healing Abilities of Doggy Daycare

Nothing beats seeing a bunch of cute dogs together. Our 2 year old beagle/border collie mix Luna goes to doggy daycare twice a week. She's very hyper so it allows her to release some of her energy and socialize with other dogs and be part of a pack. The past few days I've been having a very hard time, horrible dumping episodes with my sugar going down to 30 this morning. I was lucky that I was scheduled for hydration to help me out. My mom came home a little earlier than normal and asked if I wanted to go out to help pick Luna up from daycare. I was a bit nervous since it would be the first time going out while having my port accessed, but my mom thought it would be a good idea to get some fresh air. We arrived at doggy daycare and I was tickled to see our Luna who was so excited to see her humans and she ran over to give us kisses. Her pack came over and also gave us some kisses through the gate (except for two hilarious pitbulls who looked liked they were trying to spin each other on their backs). It made me forget for about 15 minutes that I had a tube sticking out of my chest and a backpack of fluid shrugged over my left arm. The owner was so sweet and noticed how it totally made my day and said I could come whenever I wanted to see the dogs. If I could drive that far, I would do it everyday. But for now, I'll enjoy chilling with my pup at home and visit when I can get a ride.

A Good Day to Hydrate

Because of my chronic illness I tend to lose most of what I eat, it's called chronic dumping syndrome (yea, no special medical names for my illness). Since I get sick a lot, I'm constantly dehydrated. So twice a week I have a nurse that comes to my house and sets me up with hydration therapy, which beats having to go to the hospital to have it done. It's not particularly fun and can be a bit uncomfortable, but today is pretty cool because my brother is home on spring vacation. We are watching a Die Hard marathon as I wait the four hours for my treatment to be over. Yippee- Ki- Yay.

Here goes nothing....

I have lived with a chronic illness for a decade now. My doctor's (the entourage that I have) tell me constantly that my case is unique to others and there is no easy fix. For 10 years I always held out hope that a new medication or procedure might help, but to no avail. My frustration and anger came to a peak when I realized that working at my job was something I was unable to do. 

The one thing I kept thinking over the years was "One day, I'll be normal." However, about 5 months ago my doctor came clean in saying that being normal wasn't ever going to be a possibility for me. I was devastated, but still hoped for that "magic pill" that would come out of the wood works and cure me. It didn't and it won't in the foreseeable future.

It took the new year for me to look at myself in the mirror and say "Wake up Kate! Things might be looking bleak, but life has issued you a challenge. What are you going to do about it?"

Accept it.