What she said was exactly what I needed to hear today.

Every time it is time for an infusion, I get a "this f*cking sucks! why is this my life?" attitude. I hate going, I hate the side effects, I hate getting an IV in my chest, I hate the unknown of the disease, I hate the unknown of the drug. I hate everything about this disease and what comes with it.

Now, I know you are thinking, this is going to be a "woe is me" post. You're wrong. :)

Yes, I have crappy stuff that happens with atypical HUS. Yes, I have a non-curable, extremely rare disease. Yes, I was in multi organ failure 8 months ago. Yes, I will have to get treatment at max every 14 days to keep me alive, for the rest of my life. Yes, it sucks. 

I won't lie about those parts.

But what I would like to talk about today is the support groups, the people you meet (in person and via the internet). The people that help you see that you are not alone.

Now, I do have other diseases and I have friends with the same. I'm on support groups for those 2 as well. They are so very helpful and understanding. And I've made some amazing friendships through them.

However, this time, I am discussing the people I have met since being diagnosed with atypical hemolytic uremic syndrome. 

Like I said above, I am normally pretty irritated and down when infusion time comes around.

I get my infusions at an oncologist/hematologist's office. They have an infusion room in the back that has about 8-10 recliners where people are getting pumped full of IV drugs. Some people that have crazy, serious side effects. Some are people that are dying. Some are people that are very, very sad. There are the angry people. There are the VERY happy people.

The happy people are who I try to always sit near. Since getting treatment anywhere from every 7 to 14 days for the last 7 months, I have gotten to know a lot of the "regulars" there. Most of the people have cancer and are there for chemotherapy that will make them very ill.

I have seen people have bad reactions to the drugs, people vomit, etc. This type of place isn't for the light hearted. 

But today, I noticed something different. I started talking to another regular there. We have met many times and always have a few laughs together. She is completely bald. And has had cancer for THREE years. She's been through almost every type of chemo there is. 

She is positive. She makes jokes about her cancer, her treatment, her side effects, the fact that she is bald and she makes people laugh. She more than once has stood up and walked over to someone else (while she is hooked up to an IV and pushing an IV pole), just to give them a high five; rub their back when the nausea comes on; just to tell them they will be ok.

Today, after one of the above happened, she was talking another patient through treatment. was telling her just to breath. To picture happy thoughts. To pray, even if outloud. I've seen her pray over them.

Once she got back to her seat, I asked her, "how do you do this?" "how do you not bust out crying with these people?" "how do you stay strong when you are going through so much?"

Her answer was shocking to me, "you learn more in these type of settings than you will learn from most doctors. You learn that there are others to lean on when you need it. Those that get what you are going through. Those that you pick up while they are down, are the ones that will pick you up when you need it. You have to try to stay positive or these diseases will kill you VERY quickly. The power of prayer and the power of positiveness is the only thing that has gotten me through this for so long. So now I get my treatment and I support others."

I got teary eyed and just said "thank you". What she said was exactly what I needed to hear today. I simply could not do these treatments without my support group. 

Hope this helps others too. 

And just like that……a decision is made.

After lots of thoughts, research, prayers, asking other’s opinions, etc…..I have decided to add the 6-MP (talked about in my previous post) to my list of drugs.

After talking with the GI’s office some more, I feel like I can add this in and give it a try. (anything to avoid surgery at this point).

If I don’t like it, or I feel it isn’t working, or my blood/lab work gets crazy…..I will discontinue it.

So please keep me/us in your prayers.

10 Things you probably don't know about me and living with Crohn's disease

I thought I would make a list of things that most people don't know about me and my Crohn's disease.

1. I have a low grade fever about 5 out of 7 days of the week. Normally it starts in the late afternoon, early evening. My eyes will start burning and my energy is instantly gone.

2. I am achy most days as well. You know how your body aches when you are feverish? yeah, that's what I feel a lot.

3. I inject myself with Humira every other Sunday morning. For that whole day, I just mainly sleep as it is impossible to keep my eyes open.

4. I miss having a social life, but I don't miss those people that were just my party friends. Turns out, I don't hear from them at all now that I don't party.

5. I take 28 pills a day. That is 28 between my prescriptions and supplements.

6. My potassium sometimes gets so low that I get intense cramps in my legs and feet, that I have to try to walk off. most of the time this happens in the middle of the night and results in crying. Every time I go to the ER, my potassium is so low, they make me take a giant horse pill *barf*

7. I don't sleep at night, which means during the week, I get hardly any sleep. On average during the week, I sleep about 2-4 hours a night....and that is after taking sleep aids. I take many naps during the day on the weekend.

8. Due to my steroids (Prednisone), and the increasing/decreasing required to find a good dosage for me, I have gained 21 pounds in 2 months. NOT COOL!

9. I now know more about my body, more about side effects of meds, more about Crohn's than I really ever realized I could know.

10. At the age of 34, I feel most days like I have been hit by a truck, but I keep moving along. I have some really bad days and some really good days though.

Humira side effects - week 1

I would like to use this blog as a diary of my side effects, etc.

After speaking with my GI's nurse today, I am experiencing some of the side effects associated with the Humira injections.

1. I have exhaustion at a level that I cannot even explain. If I sit too long without talking, working, occupying my brain....I could literally fall asleep wherever I am. It's like the exhaustion takes over and I can't even think straight. This is described as my immune system starting to lower and shut down, then my body goes into protection mode.

2. I am having very vivid, weird dreams when I am sleeping. The dreams will carry over from night to night and continue on. I have never had dreams like this before.

3. I am in a brain fog. I forget that I have done things, etc. Its like it completely is gone from my memory.


While these are VERY normal side effects, they keep me on my toes. I am having to learn to listen to my body more and relax (lay down, etc) when I feel like I need to. I am writing things down more so that when I don't remember, I can look back.

This is all very real and scary for me at times....and other times, I am realizing this is just a way of life for me now and that's what I need to adjust to. I am praying like no other and asking for God to guide me through this new journey of what my life is becoming.