For every action there is an equal and opposite reaction

I post today with much relief today. I have had a very bumpy month and a half with Humira.
Where do I start with it all? 

I fought a huge battle with my insurance company, Premera Blue Cross, over being approved for Remicade. They have a 3-4 step program to get to Remicade. First you have to take antibiotics, such as Cipro or Metronidizol. Now antibiotics aren't supposed to be used long term so using these would be more for managing small isolated issues. Not my ball park. If those don't work then you move on to steroids because those are every effective but you can't be on them for long periods of time because they cause some very very serious side effects. Those side effects will inevitably happen to everyone who takes steroids long term. Im sure you may have heard of some of them. The 3rd step is Humira and if that doesn't work out because you had an allergic reaction or something then you could advance to Remicade. 

So that's exactly what happened. I had an allergic reaction to Humira. Before the bad reaction I noticed that I had smaller ones at very specific times. About 3-4 days before the next dose of Humira I would get hives for no reason. This was very confusing to me because usually I don't get hives unless I have a trigger like alcohol that I'm not supposed to have. I have learned over the years that I can't drink wheat beers. I stay away from most beer actually. I have found some gluten free beer that is quite good though. So even though I wasn't drinking even at these times I was still getting hives. Granted they were very minor, one hive or two. I started to notice the pattern after the second dose. By then I was taking Benadryl practically every day and this was causing me to become very tired all the time. I was getting hives randomly so I was taking the Benadryl all times of the day. In the morning, during work and at night.  It made working hard. It made doing anything hard. Being sleepy all the time is really terrible. On the day of my third dose, the last Humira shot I would take, it was Monday June 9th. I had my husband give me the single pen injection of Humira after work as usual. We stayed home and had dinner. Nothing too eventful. After dinner we watched a movie called Pompeii from redbox that my brother in law had rented. (By the way that movie was really good if you haven't seen it and John Snow from Game of Thrones is in it and he is so yummy to look at in the movie. And if you haven't seen Game of Thrones then you definitely need to start watching. ) Anyway we were watching the movie and about little more then half way through I noticed that was getting really warm, which is the first sign of hives, for me at least. Then I got a little itchy. I looked at my arm where I was itchy and there was a little raised white dot around the red skin I had been scratching. My first thought was to take some Benadryl. I came back and watched the rest of the movie. I was thinking that everything would be fine and the hives would go away. Towards the end of the movie however I started having this feeling that I needed to cough which is strange because that had never happened to me with hives. I had no idea whether to relate it to a reaction or not. Quickly following this coughing I began to have trouble taking in a full breath of air. I would wheeze and cough if I tried to inhale fully. I started to get really scared that I was going to seriously die on the couch. The credits started rolling and Robert could tell something was wrong. I said to him "Well I got hives and now I can't really breath right. I took a Benadryl but I don't know if it was enough." We decided it was best to head to the ER in Puyallup. Robert drove like a bat out of hell and I breathed shallowly hoping that this would help suppress more reactions like my throat swelling closed. We arrived at Good Samaritan Hospital and were told to wait. :( I was freaking out but continued to breath slowly and shallow. They did take me to triage fairly quickly for a packed ER and looked me over. My whole body was covered in hives and especially my eyes. My eyes were puffy and bright red. I wish I would have taken pictures. They gave me an IV and injected me with Benadryl and steroids. The Benadryl made me feel extremely sleepy and slurred my speech. I felt like I couldn't think either. Now that I think back it was really funny but it was frustrating at the time because I was trying to tell the nurse something and couldn't articulate and actually just stopped short of a full sentence and slumped over in defeat and let the drug take over. Once I got the steroids I was leveled out and not so dumb and helpless feeling. I was sent to wait for the doctor in the waiting room for an estimated hour and a half!!! Mind you it was currently 10 pm and Robert and I both had to work the next day. So after 30 minutes I start to question staying because I feel just fine. Robert left the decision in my hands. I was worried that if I didn't stay and see the doctor for a full diagnoses and discharge my insurance wouldn't approve my moving to Remicade. But in the end I couldn't sit there in the uncomfortable chairs for another hour. So we asked to be discharged against the recommendation of the hospital and went home.

I felt fine when we left and didn't have any recurrences of symptoms that night or the next morning. I had gone to bed a few times before scared that I would wake up in the middle of the night heart racing and hives all over me. It's scary because you never know when it's going to be critical. But the next morning I woke up feeling normal. I called my doctor first thing to let them know what happened and they got in touch with my insurance to move forward with remicade. The only snag I had with the approval this time was that the inaurance needed a copy of the ER visit paper work to prove that I had a reaction. Once they had that I was approved! Such a relief. My doctor scheduled me for a remicade infusion on the day that would have been my next humira injection two weeks after the previous injection. Honestly I was happy I had the reaction. Those shots are really painful and I dreaded them. Plus I was looking forward to not having those sporadic reactions anymore.

My appointment was at North West Hospital in North Gate. Some of you might be thinking "Brooke, you live in Bonney Lake. That's so far from you. Why wouldn't you go somewhere closer like Tacoma?" I think this all the time. The only problem is that I started seeing a naturopathic doctor in late 2012. He operates out of the University District in Seattle. He networks with other Seattle doctors including my Gastroenterologist and my Gastro Doctor uses North West Hospital for infusions. So that's why I spend time and gas getting there. I really don't want to change naturopathic doctors cause I really like Dr. Donovan.  

I have had Remicade before so I knew what to expect at my visit for the most part. I had all main components in mind. There are a few differences from my last time to this time however. Back in 2012 at Harbor View I lived in Renton which was not that far of a drive to Seattle. Now I live in Bonney Lake and North Gate is a grip away! In 2012 I had a PICC line in for my at home IV antibiotics so I didn't have to get an IV put in. This last time I did have an IV put in but the nurse was amazing and I didn't even feel it. I absolutely love it when they are good. The next thing was that at North West I got a complimentary meal and man their food was really good for hospital food. At Harbor View there was no meal.  :( Last time at Harbor View I had a bed to lay in which was awesome because I got to take a nice nap! At North West it looks similar to most movies I have seen of Chemotherapy patience where you have to sit in a padded chair. It wasn't too bad but I wanted to lay down. (Hey 3 and a half hours is a long time). The nurse offered to bring in a bed but I didn't want to trouble her.

With infusions they make you take a low dose of an antihistamine prior to doing the infusion in case you are allergic. That makes me wonder what would happen if I didn't take it. If I would react like I did with Humira but the difference is that an antihistamine is supposed to stop a mild reaction and what I had with Humira was as close to anaphylactic shock as I want to get again ever. While I was there this time I read a book and leaned back in the chair. I snapped some picture of myself, my IV and my surroundings. 

        Here is couple of the images I took.

During the process the nurse comes to check on me and slowly she ups the speed that the medicine is transferred into my body. I had no problems so it went about as fast as it could and I was done in about 3 hours. Since then I have been feeling fine in the respect that I haven't had any hives at all! Score! But I did just recently have a recurrence of my abscess. It has drained and my doctor thinks that we should just wait and see if it does come back to put me on any antibiotics. My doctor said that the decrease in my immune system from the Remicade and Humira makes me more susceptible for infections and with an open fistula the abscess can happen. The only reason I am on this drug is to close that fistula up so hopefully that can happen soon because these abscesses could just keep recurring. So far its been almost a week and a half since I felt any symptoms. So for now I am just waiting for my next infusion on August 11th. Infusions happen every 8 weeks which is awesome I think. No every two week business anymore.

It also was just recently my birthday on the 25th. I turned 27 which I feel is not an exciting or scary age to turn. Its the mid way point between 25 and 30. Now I can't believe that I am almost 30 and it doesn't feel like I will ever grow out of my late 20's. I think I still have a little early 20's left in me too. But 3 years is a long time so we will see how I feel then about advancing to a new age bracket. Anyways... I just wanted to share a couple more pictures of what I have been up to for anyone that hasn't seen my pictures on Instagram or Facebook.

The weather has been so nice that we have been going

out on the water. Finally enjoying our boat.

We went to the King County Fair in Enumclaw. It

was fun watching the barrel racing and getting a 

few pictures as llamas. 

I few pictures of me and my girls from my "second

birthday party" as my husband likes to call it. So

I had a BBQ that was kid friendly a few weeks

before my birthday so what? 

My little brother and Step Son. They are BFF's.

And just last weekend was my Company

party at Seahawk Stadium which was

amazing. I love my company!!

By the way thanks for reading my Blog I have over 1400 page views which totally blows my mind. Love you all and talk to you soon!!

XOXO

If you want to know what Crohn's is like..

Here is a small taste of what Crohn's disease is like.

This is from another blog that I came across. Another fellow Crohnie. Kellyontherun.com

an ode to the commode (& other shitty diseases):

its a shitty disease, this thing called “Crohns”
put to a movie title, it would be “king of thrones”

theres a few secrets that some like to keep hidden,
but since im a rebel, i like doing the forbidden
there are too many puns,
besides “it gives me the runs”

“what CAN you eat?” its simply really..
no popcorn, no butter, no spicy chili,
no milk, no red meat, no seeds and no nuts
no broccoli, no beans or id have no guts.

“how do you poop?”
the snake poop, the crippler, the incredible hulk,
the splash back, houdini, the second wave bulk.
theres the spinal tap, the drunk poop & lincoln log turds,
then the one you rethink having cheese curds.
greasin’ the bowl, growin’ a tail,
the times you cant wait to get out & inhale.
its too hot in this room, get me out now,
sixteen times a day, i scream & shout OWWWW.
i grunt, i groan, i scream & i yell
if theres one thing im good at it’s IBD hell.
the bloop, clank however you put it,
a dump is a dump, a shit is a shit.

with the amount that i spend on soft toilet paper,
WELL…….there is no rhyme to this one. im just an expert.

at the age of 26, i cant trust a fart
bring a spare set of panties, cause ive mastered the art.

im an old soul, trapped in an old body,
thanks to medical debt, retirement wont include a Maserati.

creaky joints, spare clothes & osteoporosis,
the joys of annual tests for Tuberculosis!

laxatives have become a part of my norm,
sometimes if im lucky, my poop has great form!

you may have left me with medical debt,
and sometimes depressed, since theres no cure. yet.

“what do you eat?!”.. a familiar phrase..
the others? oh, i could go on for days.

misconceptions of “invisible illness”, ive heard them all.
“youre to fat, youre too skinny”, too many to recall.

the most annoying one?
“i’ve got your cure-all”
“stand upside down, eat tree bark, take these supplements, youll be fine”
while i roll my eyes, envisioning bottomless wine.

should my poop be this color? am  i sicker than i think?
all of these strange symptoms just make me want to drink.

porcelain throne, john, loo.. i see you too often, in my humble conclusion.
look beyond my smile, often its illusion.
im exhausted, im tired, i want to throw in the towel.
some days i do.. because fuck my small bowel!

my buttholes itchy
im feeling bitchy.
in many ways, IBD deserves no praise..
but its strangely blessed me in unexpected ways…

"Sing me to sleep, and then leave me alone."

I wrote this blog a while ago and didn't post it for some reason. Currently I am not feeling this way. The twists and turns of Crohn's are wonderful. Maybe it has to do with my new medication. New blog about my Remicade and an update coming soon.

I don't know if anyone knows The Smith's song "Asleep" but that one excerpt from the song really hits home to me. A proper title for this blog post. I am speaking to my inevitable tiredness and energy depravation. It is hard to explain to "normies" what it feels like to have the life snatched right from under you. Some days I feel like I can't get up and started for my day. Work nearly kills all my energy and ambition to get to the gym most of the time. No matter what food I eat that will give me that boost I don't feel like I can get a full good work out in. When laying down is more important than cooking dinner. Not everyday is like this but the ones that are feel really miserable and I usually have a miserable attitude as well you can ask my husband. But it hurts to be called lazy when you really can't control it. To be told to just wake up when you just really can't. I try my best to do those things but inside I am not having a good time and I just want to rest to be let to lay down and be left alone sometimes. Sorry for killing your vibe but I just can't give anymore today.  :(

Before I had my surgery back in 2012 I had already been experiencing this type of overwhelming fatigue for a long time. My body was not absorbing nutrients from my foods. Post surgery I had better nutrient absorption but My B-12 absorption was completely cut off. Different section of your intestinal track absorb certain nutrients. The Ilium absorbs B-12. My Ilium was completely removed so therefore I don't absorb B-12 naturally through foods. By the time that finally figured this out with my Doctor I would go through my days feeling unmotivated, foggy and tired. When working sometimes I space out and can't concentrate on what I am doing. Occasionally this also happens while driving and watching TV, etc.

It just really feeling like I just woke up and it last almost all day sometimes. The groggy, can't keep your eyes focused just want to go back to sleep feeling. More recently I have been feeling this way a lot. My doctor first told me that when taking the B-12 shot if I ever start to feel this way more often then I should take it more frequently. I was finally at a place where I felt like once a month was working for me. Now in the last three months I have been taking it every three weeks. But I am starting to think that ever 2 weeks might be better.

Most people know that I really like to go to the gym. I talk about it a lot and have been gaining more interest as I research nutrition and a natural more healthy life style. I have been an on again off again gym goer since high school. Frequenting the gym is the main reason that I have been able to keep my weight about the same give or take 10 pounds that I lose and gain. My deficiency has made it really hard for me to get there lately and it sucks because I find this inner strength and then after a few weeks I find myself giving in to my fatigue and sitting around. I feel bad because then my husband uses me as an excuse to not go as well and I don't want to holding him back from his goals.

So where do I find this balance? I have to work harder at being normal. I have to make sure that I get the right amount of sleep. I have to eat the right foods. I have to make sure that I exercise enough. That is how I feel normal. It is exhausting just following my diet alone and when you put work and gym in the equation I sometimes barely have time to see my friends and family. What price do I have to pay to feel good and is it worth it. For the first month of the year I sacrificed time for friends and family so that I could focus on getting better. I went to the gym once or twice a day and spent hours preparing food to eat. It made me feel so good but I had a hard time seeing anyone outside my house hold and functions which involved foods which I was abstaining from were hard to sit through but I dug deep and did it. Some how I need to find that again through my fatigue and lack of motivation. I can and will do it. I just need the strength to.


Thanks to everyone that reads my blog. I can definitely say more on here than I can to everyone in person. XOXO