Infusion #3

Yesterdays infusion was by far the worse one that I have had yet. I didn't have a scary reaction like the last one where I couldn't breath and had sharp throbbing pain all over my body but I didn't have the same kinds of reactions this time just on a smaller scale.

I was very excited that the wonderful team that Dr. Tobin has were able to get me scheduled for my infusion yesterday in such short time. This time my husband was going to go with me to the infusion to keep my company and make sure that I was alright. Being alone is situations like the last are really scary. MY appointment was for 12 PM in Bellevue at the UW Specialty building. We checked in waited and shortly was greeted by the nurse that was going to be working with me. She brought us back and to the infusion area and there was a choice of a chair or a gurney. I chose the gurney so that I could lay all the way down. The nurses name was Ginger. Ginger took my vitals and gave me Tylenol and Benadryl. I was upgraded from just Claritin to Benadryl after my reaction to the last infusion. The Remicade was mixed quickly. A lot quicker than Northwest Hospitals was ever able to do it. We got started so much faster and it was really nice. Ginger put in my IV and hooked me up to my line of Remicade. We started off slow on the rate of 10 ml per hour. Ginger would check on my every 15 minutes and increase the rate until I hit the max of 250 ml per hour.

 Mt IV the nurse put in like a pro. Didn't even hurt.

My wonderful husband.

Me with my smarty pants glasses. Just got them a few weeks ago.

Within the first 15 minutes I could feel my breathing not feeling so right. I felt like I had to cough and if I inhaled deep I would cough. I didn't say anything because I wanted to see if it was going to get really bad first. I know that might sound dumb but I didn't want to call anything too soon. When she bumped me up again I started to feel those throbbing pains in my back. They were radiating down to my knees and every time my heart beat I could feel the throbbing. I was given a heating pad by the nurse and it was a little better. For the next two checks and rate increases I started to feel cold. I asked for 2 warm blankets. I began to get the shivers so bad that I felt like it was uncontrollable. I tried my best to curl up and get warm but for a good 20-25 minutes I as just shivering. I know that shivering is the way of the body keeps itself warm or warms itself up so I just let it happen. After I was able to get that under control my back started hurting again. the Benadryl hit my really hard after the first hour and a half and I was so tired and felt a little bit high. I couldn't think or talk much. It was too taxing on my brain at that point. I laid down and tried to sleep. I didn't really sleep because every 15 minutes Ginger was in the room taking my vitals. But  during the last stretch of the infusion I got an incredible head ache. It was so bad and radiated into my jaw from my temples. I told the nurse about that and she asked if this had ever happened before and I said no. I just dealt with it hoping that it would go away after a while.

In the middle of my head ache phase.

We finally got to the end of the remicade. At the end they transfer the line to a bag of saline and let the rest of the Remicade finish. I am not sure if the nurse execrated the speed for the last little bit but I could feel my self getting hot and my heart was beating faster. My head ache pounded and my teeth ached. At the end the nurse agreed to let us leave. She mentioned that usually they keep people for an additional 30 minutes just to monitor them. I had never had this at NW Hospital so she didn't see why I couldn't leave. She did take my vitals one last time and saw that my temp and Heart rate had jumped up. She gave me the direct number to the nurses station in case anything happened after I left so that I could tell them right away.

I literally felt exhausted from all the things that happened during my 3 hour infusion. I hit the bathroom before we left and when I looked in the mirror my eyes were so blood shot. I walked to the car  with my husby and just wanted to lay down. When we got to the car I could feel a hive on my arm so I took more Benadryl of my own just in case. We had a long drive home with a pit stop for lunch. By the time I ate something I did feel better. I might say that some of what I felt after wards attributed to not having much to eat all day. By the time we got home the second dose of Benadryl made me a little sleepy but I was able to watch the Seahawks game with no trouble.

A little hard to see but can you see those red veins?!

These are some of the things that can happen during an infusion. Everything in Orange I experienced at one point durning the infusion.
Allergic reactions during or after the infusion—hives, difficulty breathing, chest pain, high or low blood pressure, swelling of face and hands, and fever or chills.

This morning though I woke up and every joint in my body is incredibly painful and my muscles are sore. From the list of side effects this could all be normal.... or a sign of HBV or Lupus like symptoms.   I called the nurses to tell them how I am feeling and they said to just take tylenol today for the pain and to call tomorrow with an update on how I am feeling. The Doctor may not want me to have another dose. At this point I feel like I might just be screwed and never get better. People with this disease lose their entire colon and have to get an ostomy. The Ostomy isn't the end all be all either. I have read about people getting Crohn's inflammation in the Ostomy. What do they do then? Some people get so sick that they can't fight anymore and die. I don't want any of that to happen to me. I certainly don't want to have some medication make me feel worse or cause a whole new list of issues like cancer. I just don't know what to do right now.

Until next time XOXO!

Tick tock... Time waits for no one.

UPDATE!!


I currently have a huge dilemma. I am at a very high risk of missing my next Remicade infusion and I don't know what the consequences of that might be. On Monday this week I called like usual to schedule my appointment for the following Monday the 6th and very unpleasantly found out that my Doctor was no longer practicing at that office. He had left to go to a new clinic. This put a very big kink in my plan. When I had my follow up appointment with Dr. Petty the Surgeon that saw me in the hospital at the beginning of September we made a plan that I would get my last infusion with Dr. Tobin in Seattle and then be seen by a new Gastro, Dr. Huang in Puyallup. The reality now is that Dr. Tobin is gone and the new doctor may not approve my infusion with out first seeing me in clinic which he is booked out for weeks. The other problem is that Dr. Huang is booked out until November 5th. This makes me so frustrated and full of stress. When I get stressed and feel like I am basically SOL I cry a lot. It just breaks me down.

The evening of my last post I was admitted into the hospital, 9/4/14. It was Game night, the Seahawks were playing the Green Bay and we had friends over at our house to watch the game. That whole week I had been feeling terrible and had just had a reaction to my antibiotic. As the game was getting over I was sitting on the couch so that I didn't cause my self any pain from sitting in certain positions and noticed that my belly button had an itch. When I went to scratch it I felt wetness. My mind immediately went into WTF mode and I got up calmly and walked into the kitchen to see in the light what exactly was going on. I looked down and there was yellowish colored pus coming out of my belly button. Being that this had never ever ever happened before I started to freak out. Now all the sudden I realized why my belly button had been hurting so much for the last week. I had an abscess in or around my belly button!!!! Robert had already started to follow me into the kitchen and by the time I figured it all out he was there asking me what was wrong. My eyes already filled with tears I showed him. He asked it I wanted to go to the ER and I said yes. He calmed me down and told me to pack a bag. (because we both knew where this was going to end...me in a hospital bed). So that is what we did. I packed a bag said bye to my friends and we drove over to the ER in Puyallup.

My IV. My old friend.

 I was seen by triage and waited for a room in the ER. Once in there I told the doctors my history, which by the way is so tiring. Every time I go somewhere I have to re tell my whole life story almost. I am not a talker so it is really not fun for me. I had a CT scan and the images were seen by the ER doctor. He made the decision to admit me and I went up to a room around 12-1 am. Dr. Petty was assigned to be because they first thought that they were going to need to put me under and drain the abscess that I had. Dr. Petty is the most awesome doctor. I wish he were a gastro so that I could see him all the time. He told us that I had two lovely abscesses. Not only the one that I have been dealing with in my Colon/Uterus/Bladder region but also a very small one had developed in my belly button. First he said that he might want to have radiology do some kind of procedure but I have been and done that kinda thing and I never want to do it again especially since your awake for the whole thing. The second idea was to take antibiotics and GET TO GO HOME! I was on the going home train already. Two nights in the hospital is enough for me. So that is where I was left. I went home and took 2 weeks worth of antibiotics. My follow up with Dr. Petty was good and now I am in this predicament of not knowing if I'll be able to get my Remicade.

Luckily I have located Dr. Tobin and am going to see if he will approve my Remicade and maybe I can get it done somewhere in Bellevue where he is located now.

Wish me luck that I can in fact get him to at least approve the infusion with in the next week.

So good news came last week. I called to reach out to Dr. Tobin and I was able to talk to his coordinator. Interestingly last wednesday was his first official day at UW in Bellevue. The coordinator was so nice she worked really hard for me to get my infusion approved for Today 10/6. I am so happy that I didn't have to delay my infusion and I get to stay on track. Thanks to anyone who did wish me luck or sent good vibes, prays etc. It all worked because today I go in at 12!! 


Love you all XOXO!

Remicade, weight gain and other lovely side effects

    Today I write you with 11 weeks of remicade under my belt. That amounts to only two infusions. So far I have not noticed many positive results from the biologic drug. But I have noticed some side effects. None of which I like very much.

The first 6 weeks with the drug I didn't really feel anything happening within me at all. No changes in pain or symptoms. The one thing I did notice was that my pants were getting way too snug on me. Now the great thing about summer is that you don't really have to wear pants. I have leggings and dresses to wear in the warm weather. Most the time they feel better anyway. Problem now is that fall is coming and sweatpants aren't as widely accepted as leggings and I don't want to look like I am sloppy lazy in public. Rmicade has made me gain about 20 pounds since I started it. Interestingly enough I haven't really changed my eating habits much either. The only difference is that there have been some events this summer in which copious amounts of food were available and I ate till I was full. That shouldn't constitute for 20 pounds unless I was doing that every day, which I wasn't. Now I researched it on line and found no studies that proved that weight gain was a side effect of Remicade. Some people believe that it is because my intestine are now actually absorbing all the nutrients that were before not being absorbed... My thing on that is that I wasn't having a nutrition problem before... I was having a completely different problem. My doctor tested my blood for minerals and vitamins and I was fine aside from low iron and B-12. Now just because there isn't a funded study by the developers of Remiacde doesn't mean that I believe that weight gain isn't a side effect. I was never malnourished in the first place. Anyone that is friends with me can see that. So I took to the forums for Crohn's to see if anyone else was talking about weight gain from this drug. Turns out a lot of other people had the same problem and some gained more than me. Still I can't find a definite answer and no doctor will tell you yes unless there is a funded study. So if I get really fat just know that I haven't been eating McDonald's and ice cream everyday.

At my second infusion I had an allergic reaction. This time though medical intervention was available so they didn't cease the use of it. See my Humira experience for reference in a previous blog. I was about 30 minutes in when all the sudden I felt this rush of heat go through me and I wasn't able to breath deep. I notified the MA of what was going on but my actual nurse was on lunch so they had to scramble to find the other nurse that was taking over for her. When they got to me with the IV Benadryl I was freaking out. I couldn't breath and my body felt like it was on fire. I got the Benadryl and all ended up being good. That is the good thing about IV Benadryl, it hits you right away and you can relax and get sleepy. Where as the pill form takes about 30 minutes to kick in and you have to suffer through until then. I have had a few scary moments with that. Anyways so the nurse had to call my doctor to see what he wanted to do now. Now that I had an allergic reaction we needed a game plan for either stopping Remicade or continuing on. So I had to wait and wait and wait some more. After about 1 hour of waiting they said that we would continue but at a snail if a pace. Now instead of the infusion taking 3-4 hours it was going to be about 7-8 hours. But that is better than dying so that is what I did. This day I also had to bring Brendon my husbands son with me so he had to witness that scary moment all the while being bored out of his mind. Luckily my husband works in seattle so he just picked him up after work and I was left to sit there and wait for the infusion to be over. So that was my last infusion and I am due for another in October.

Second Infusion before the reaction

Brendon bored out of his mind

Another lovely side effect of Remicade is the bill I finally got my explanation of benefits that lets me know how much of the treatment I am responsible for and holy cow. It costs about 13,000 to do one infusion. After insurance, which thank god I have, It comes out to about 850 per infusion. I signed up for a program called RemiStart a little too late so that 850 is stuck with me but hopefully the rest will only be the 50 bucks they advertise on the pamphlet.

My most recent experiences are from Labor day weekend and this week. Before my anniversary which was 8/24 I had called my doctor to fill a prescription for Metronidizole for me because I felt like I was getting my abscess symptoms again. They apparently filled it but it took the pharmacy so long to tell me that I was out of the country in Canada. So prescription is at the pharmacy and I come back from Canada and get it. Well Labor day is upon me and I don't want to be taking pills while camping so I wait one more week. I go camping and everything was fine until I ate a ton of sunflower seeds. I ended up with the worst pain I have felt since before my surgery. I was in desperate need of some pain medication and wasn't able to get any. I had to endure 12 + hours of pain. I knew that I needed to start my Metronidizole asap. So on Monday Labor day I took it at 11:30 AM and my dose is every 6 hours. I woke up this morning at 5:30 AM to take my dose. I woke up again at 6:45 and noticed that I felt itchy. I got out of bed and all the familiar areas of my body are itchy which correspond with hives. My first thought is "Great!!!". Now my antibiotic is giving my hives which is a bad side effect. Usually it should be stopped for good. I don't know exactly how many others my doctor, or any doctor has left in his bad of tricks. I am already allergic to Cipro a very common antibiotic and now Metronidizole. I know there are possibly 2 others that I have taken before. I don't know if I mentioned before that when I was at Valley I had a doctor that was just a specialist in infectious bactieria. He was trying to help clear up my then abscess with antibiotics and I was one 3-4 different ones. Man was I messed up on all kinds of pharmaceuticals. But I know that I have taken a few. But like a doctor once told me "You can be come allergic to anything at any time". No matter if I have take Metronidizole once or twice or three times before I am now allergic to it.

So that is what I am dealing with right now as I type. Hives and the eventual sleepiness from the Benadryl I took about 30 minutes ago. The itchiness is subsiding and soon I will want to climb back in bed but I won't be able to because I have to work. Today should be fun...


On the brighter side of my life I did just celebrate my 1 year anniversary with my husband! We went to Whistler Canada. It was so much fun. I was able to conquer my fear of heights. Over all an amazing beautiful place and experience.

On top of Whistler Mountain

The gondola ride from Whistler to Blackcomb

Cool Giant Rock

Bungee Jumping!!

Panoramic views 

Thanks again for reading! I hope everyone is enjoying the last of summer in the PNW!

XOXO

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

Humira 1st Dose

Well I made it. I'm alive and didn't die from anaphallxis. Here's a run down of it all.

So last night I read like 130 pages and finished the book I was reading in order to keep myself busy. I didn't want to think about the appointment looming over me. I was seriously nervous that the nurse was going to demo the steps for the first shot and It was going to hurt so bad that I was going faint or my leg would swell up and I would be rushed to the ER. So I read for 3 hours and after I was done with the book I went to bed. My Husby tried to soothe my worries and make me feel better. He was successful and I drifted to sleep.

Waking up this morning I felt pretty calm but still not thrilled to be going to the appointment. So when the time came I started on my journey out to Seattle to Frmeont to Seattle Gastroenterology. My Husby planned to meet me there so that he could be my support. I probably wouldn't have gone alone. The closer and closer I got to the doctors office the more anxiety I felt about doing the Humira shots. It took me about 1 hour and 15 minutes to get there. I arrived at the parking garage and had a small parking issue.  I parked in a spot that had a pole in between two stalls. I tried to park so that my drivers side door would open with out hitting the pole but when I moved forward I bumped the cement wall. So I backed up and ended up with the pole and the farthest edge of my door colliding when I attempted to open it to get out. I had just barely enough space to slide through while adjusting this foot and then that foot. Small victories lol.

Robert and I walked in the door and I got checked in. There were lots of people walking in and out of doors and everytime I saw an MA or anyone who had scrubs on I got really nervous. When I get anxious and nervous or mad or frustrated I cry and my adrenaline starts. My Husby was there to talk me down and make fun of me so that I would laugh and lighten up. The person who finally called my name did not look like any MA I had ever seen. He was quite a sight actually. So this 40's something year old man very tall probably 6'4"  and skinny with a full head of dreads calls my name. I was like ok awesome dude but crap now it's time to face my fears.

We walked back to the exam room and the man took my weight, temp, blood pressure, all the usual. We sat in the little chairs and then he said she will be right with you. I was actually under the impression that he would be my instructor at the appointment. So my anxiety built up more and more now that I still didn't know who was coming and when she would be in the room. Suddenly the man reappeared and took us to another room. Just a room switch I suppose.  As if they couldn't keep my guessing anymore. By this time the tears started to well in my eyes and my skin felt like it was ready to jump off my body. Then the knock came at the door and a very nice woman walked in.  She greeted us and we handed over our Humira Starter Kit.  I asked a couple of clarifying questions and also just to prolong and delay the inevitable.

The Humira Box

I didn't know that I took this picture but this is Robert with his hand on my leg trying to comfort me while we wait.

Next we got into how to take the shots. I decided to have her do the first one. The pen has two ends one end is the needle which is concealed up inside the device until you push the button on the top which is on the other side. Both sides have a cap. Once both caps are removed your ready to inject. First she took an alcohol wipe and sanitized the injection area. I decided on the leg being the injection site. It is either done in thigh or the stomach. There was no way I was doing the stomach and I am very glad I didn't want to try it now. The next step is to kinda pinch a large amount of skin, place the needle end of the pen on the skin and apply a small amount of pressure to the skin so that in the middle of the injection you don't accidentally move away and have the needle come out. Last step is pushing and holding the button for about 10 seconds until you hear a swoosh sound and that's how you know the medication is completely done being injected.

Now when the nurse was done I said wow that wasn't too bad till the very last couple seconds and it started to burn. I was surprised and kinda shocked so I got ready to do the next one myself. So I alcohol prepped another area on the same leg, took off the caps, pinched my skin, held the pen to my skin with some pressure and hit that button. Can I just say OMG that freaking hurt so bad!!! I don't know what I did but it hurt from start to finish and I'm really not even sure how I got through that 10 seconds with out pulling that needle out. I started to cry and had to take a minute because it burned and it continued to burn for a minute after I was done. I tried to collect myself for a minute and the nurse says let do the next one. I immediately volunteered Robert. He was more than willing to do it and he was already a pro from helping me with a B-12 shot so it looked like a piece of cake for him. He asked me where I wanted it and 1,2,3 he did it. It felt like the one that the nurse gave me so I decided you know what you can do the last one too. The last one hurt a little more but not anywhere near as bad as the one I gave myself. I wiped up all the little drips of blood as the nurse wrote out directions for the remaining two I will take in two weeks. Before we left she checked my legs to make sure that I wasn't having a reaction and gave me a tissue for the road and we were out of there.

So in the end it wasn't that bad but I don't think there is any way I am ever going to give myself one of these again. If Robert wasn't there it probably would have been a much worse appointment for me so for that I am very thankful!

XOXO

Humira

I know that I haven't posted a blog in a long time. Life gets busy and I don't find time to write down my thoughts and feelings. Much has happened in the last for months. Good and bad. At least the bad haven't been as bad as they could be. There have been some new developments with my Crohns that have put me in a very serious position.

In February I came face to face with a decision. My husband and I had the luxury to plan a trip with friends to watch the super owl in Vegas. This was going to be second time and first with just friends so I was pretty excited. A couple weeks before the trip I started noticing some weird things going on. I had developed a painful lump in my groin. Now this wasn't very unusual as my glands tend to get irritated often. The strange thing was that the closer to Vegas the larger and more painful this lump got. This doesn't usually happen. Usually the swelling goes away on its own. So I decided that I would wait until after Vegas as I really didn't want the doctor to tell me not to go. As the weekend went the worst the situation got and by the end if the weekend it hurt to wear tight pants and in some cases walk. This was starting to remind way too much of my abscess that sent me to the hospital in 2012. When we were on our way home I was very relieved and dead set on seeing my doctor ASAP.

Luckily I was able to see my doctor that week. I told him all about my symptoms. He too was concerned about an abscess so he laid out a plan that started with an exam. It turned out that the lump in my grok. Was nothing but an inflamed gland. But the inflammation was the worrisome part because that means that another part of my body was no in good shape. Now I have been dealing with a fistula or two so my doctor thought that maybe there was an abscess that had formed stemming from the fistula. I had an exam, CT scan and an appointment with a surgeon to determine what was happening and what needed to be done. The bad news is that the fistula has tunneled to another organ in my body but the good news is that the fluid from the abscess is draining so I'm in no immediate danger and that surgery is not an option. The next topic for discussion was treatment. By no means is having an abscess a good thing so I need to fix that.

My Naturopathic doctor suggested that I see a GI doctor within his network so that he could be in the loop of my treatment better. I went to see Dr. Tobin of Seattle Gastroenterology. He was nice enough doctor who talked to me about treatment. What he suggested was that I get on a biologic drug which show to be more effective in treating more complicated cases of Crohn's, which I happen to have. (lucky me) So we went over the different brands basically. We settled on Humira because it was a self administered drug. I already take B-12 via IM injection so I thought yeah this will be easy. I left with a good outlook on things. I had to wait 2 weeks for the medication to get approved and mean while my naturopathic doctor had prescribed some antibiotics to bring down the abscess so that A I would get relief and B so it wouldn't get worse when I started Humira. Humira is an immunosuppressant drug that inhibits your body to fight infections. If I still had a raging abscess while on this drug then it would do more harm then good.

Also while I waited for approval from my insurance I started searching Humira on line more. I wanted to know how it was administered and what people had to say about it. My doctor never covered the the details about each drug. Turns out that a lot of people say the medication stings pretty bad going in, some get a large welt after and some even have to take a Benadryl because of itching and rash. Someone described the feeling as battery acid being injected in her leg. I heard that this is because the liquid needs to be refrigerated and warming it up to room temperature helps. Other tips were to numb the area with an ice cube before injecting. I also found out that the first time you take it you have to take 4 syringes, then 2 two weeks later and then 1 every two weeks. WOW.

The more I found out about this drug the less and less I like it. I don't want to take something every two weeks that i'm going to have to ice my leg down for and have it feel like i'm injecting fire in my leg or stomach for 30 seconds. 30 seconds is a long time for pain. So I called back my doctor and said you know what Remicade isn't sounding that bad right about now i'd like to switch please. The doctor approved of my concern for switching and so we waited again for the approval from Premera. (side note- Remicade is also a immunosuppressant but it is given via IV injection. You receive it over a couple of hours time every 3-4 months. I have had this before in 2012 before my surgery. I know A I am not allergic and B it has been around for longer and has more research.)

After a few weeks I got a denial letter in the mail from Premera because I didn't try Humira first they would not approve Remicade. I was very upset about this. I called my doctor and spoke with his nurse about what could be done. She said that the doctor talked with the insurance and tried to fight for me but the insurance wouldn't budge on their decision. My secondary insurance said that the medication was approved under my plan but they couldn't tell me until they were billed. That means that what ever percent would be covered after the procedure was don't.However I wasn't given a 100% answer of assurance since they can't tell you  unless the procedure has already been done. So I am siting there with weighing the option of just getting the Remicade and possibly paying 5000 out of pocket plus other costs. After talking to the nurse and medical billing 3-4 times, calling Premera 3 times, crying and having a full on nervous break down, and discussing things with my husband I caved in and decided that Humira was my only option. I felt let down and angry with my insurance for forcing me to take a drug I wasn't comfortable with or taking not treatment at all. I was hopeless and very very angry.

Fast forward 2 and a half weeks and I am less than 24 hours away from taking Humira for the first time. I pick up my starter kit today which cost 100 dollars and tomorrow morning I meet with a nurse who will explain how it works, demonstrating on me and then letting me try. A training then call it. My husband will be there to support me as I do this even though I really don't want to and I think I might have him inject me with one so that later on if I don't want to do it then he can for me.  I am nervous for what it will feel like and what will happen to me afterward. My hope is that I will go into Anaphylaxis so that I won't have to take the Humira anymore and be switched to Remicade or at the least I have some kind of allergic reaction even on a very small scale to complain about. Things could turn out fine and I am just being a big baby about it. Speaking of babies, Humira and babies don't mix so as long as I am on it I won't be able to breast feed but that also tells me that I shouldn't be pregnant and on this drug. Not that I am planing on having babies anytime soon but you never know whats going to happen.

Life just keeps getting more and more complicated. hopefully I can update about the outcome of the Humira before another 3 months passes.

XOXO