In sickness and in health

With my fiancés permission, I felt the urge to write about this day. This year has probably been the worst yet. I have been battling my own health issues since January. Latley, everything has gotten much worse. I will get into me in another post.

I am currently sitting waiting for my fiancé to come out his colonoscopy. As I have had my brave face on, I may be more scared than he is. Scared that I KNOW what the outcome could be. I sit in the waiting room trying not to look at the clock. I watch other people getting called back, but I still anxiously wait. 

Over two weeks ago I was in the room with him when his doctor said: “Lets do a colonoscopy. We just have to make sure it’s not Crohn’s.” At that moment I looked straight up at the ceiling to the light. My eyes became wet and my heart sank to my inflamed   stomach. To imagine someone I love have to suffer the way I have, would devastate me. 

Of course, he remained calm and agreed to the colonoscopy. Last night was just a bad flashback. I remember drinking that gallon of vomit and running to the bathroom all night. I remember it all. This was the only case I could think of where ” the night before” was NOT the worst part. I believed it was, but little did I know that day would change the rest of my life. 

Watching him do everything I did back in January, was very hard. It had to be worse for him, after seeing what has happened to me since. 

The doctor finally came out and butchered the last name. I didn’t care. Right here!! I shook his hand and he sat down and told me he is okay. No diseases or anything, but he needs to watch his diet. Phew! I walked back to his recovery room and saw him half awake. I sat down with him and just took everything in. We have grown so much as a couple and this year more than ever. He has gone to my doctors visits/ hospital stays and has taken care of me. I am happy to be able to repay the favor.

I helped him get dressed and he kept asking me the same questions. I didn’t mind since I work in geriatric care; I am used to this. We were both disappointed to find out his doctor didn’t have any colon photos for us! We wanted to compare damnit! 

The drive home was bittersweet. Yes, he does not have anything chronic. However, we still do not know what is upsetting his stomach besides his diet. Could that be it? Just poor diet? All that trouble and no suggestions were made besides maybe for him to stay away from dairy. He may not listen and I have already fought him on the hot sauce, but he is okay and that is all that matters. Maybe today will be his last fiesta… Not holding my breath.. 

We are both resting now, with the peace of mind that he is okay. 

A letter to yourself

If you could write a letter to your younger self knowing what you know now; what would it say? I recently came across a old letter I wrote myself in middle school. I was supposed to look a few years back. I thought to myself “If only I knew then what I know now”.  So, I thought I would write the letter to my younger self. 

To the happy girl,

So far we have lived a good life. We have a lot of friends and have a supportive family, with a few bumps in the road. You will become a lot closer to your older sister and don’t worry, your dad will forgive you for everything you put him through. You will build the relationship with your mother and this will take some time.

Your precious dog Carmela will live a long life, but sadly your own dog, Gizmo, will leave you too soon. You will also find a new joy in your life and get another dog, Yogi, but Gizmo is always in your heart. 

Unfortunately, you will have a psycho boyfriend, who you end up getting a restraining order on. Don’t worry though, you end up meeting the love of your life. He puts up with too much. Trust him with your heart, because he loves you more than life itself. You will get your own home with him and get engaged to be married. 

You will have a very strong work ethic and land a great job being a security officer. You will love your job, but don’t forget about your passion for criminal justice that you earn a degree for. 

Sweet happy girl hear comes the bad part, on January 19, 2016 you will be diagnosed with a horrible disease. This disease is called Ulcerative Colitis. This will be with you forever. Not only will you struggle to keep it under control, it will effect your whole body along with the medicine that you take for it. Get comfortable taking a lot of pills, because thats what you need to feel better; and a self injection. It will change how you look and feel. It will make you question so much of who you are. The first year will be bad. You end up in the hospital for a while and a month later you still aren’t better. For some reason, your heart beat is way too fast. To the point where it is considered dangerous. No one knows why. 

Doctors end up putting you on a 30 day heart monitor, where there are people constantly watching your heart. No one knows why this is happening, but it may be connected to your autoimmune disease. Or, it could be something completely different.  

It will be hard and you will have some break downs. Keep an eye on yourself and just know your a survivor.

Jennifer

If you wrote a letter to yourself younger self what would you say? 

I guess it was time for a meltdown

As most of you know, the moment you start to feel better is when your disease reminds you that you are still in a relationship with the beast. I had a nice reality check today.

After my hospital stay in June, they were treating me for viral pneumonia. To this day I am still having shortness of breath. Which was my only complaint to begin with. All the doctors are still not convinced that I had pneumonia, but they don’t know what else to call it. My only problem is my heart rate being so high. Even after putting me on a high dose of medication to slow my heart down, it is still not where it should be.

I currently have a heart rate monitor on me for the next 48 hours. They want to monitor my heart rate a little closer, without me having to stay at the hospital. So I picked that up today. 

Now, my liver tests have jumped up to a scary level. My doctor has suspicions that this is autoimmune related. Which is good and bad. We wont know until more testing is done next week. 

You would think I would be used to tests. Well, I am. That is the problem I have right now. I am exhausted!! I am tired of testing and not knowing. Even when I AM feeling better, things still aren’t better! How could that be?

I blame all of this on my disease. Every ounce of it. Okay, so what I just have wires hooked up to me. Harmless enough. Well, I am tired of doing harmless tests and hospital visits. I have had enough. If my body could fight,I wouldn’t have any of these problems. I know this disease makes me stronger, but even though I am feeling better now, the tests say differently. 

Finally, I just let myself cry tonight. I didn’t want to. I just happened to look at myself in the mirror and saw all the wires hooked up to me. I then ignored it and tried making something to eat, when I just broke. It’s normal.

I am almost in remission and that is what I have to keep in mind. There will be bumps in the road, but I must keep going. There is a long road ahead of me and this is just the beginning. It’s okay to get upset at doctors, friends, co workers, and even yourself. Learn to be honest with yourself and your feelings. If you need to break down, then do it! It is normal and look what we are up against. Give yourself more credit. 

What are some of your triggers when you break down? 

“This is the first time, in a long time that I have seen you look so much better”

I felt the urge to share my recent experience at work. I was making my rounds at our skilled nursing building (remember I am a security officer) and I was checking in on the receptionist to make sure everything was okay. 

She took one look at me and said: “Oh my god, your feeling better aren’t you?”

(I thought to myself my god I have already worked 12 hours I look like crap..) 

 I said: “I am!”

She then gave me a huge smile and said: “I can tell!” She explained: “Before your eyes just looked beat and you looked so exhuasted! You look so much better and healthy.” 

This woman has followed my journey since before I was diagnoised. Before my procedure, I explained to her my symptoms and I will always remember what she said to me:”I hope you don’t have what my son has.. He has Ulcerative Colitis.. He is always so tired and we cant even take a car ride to Chicago without stopping multiple times.”

Turned out, I had the same diagnosis. Needless to say, she knows a lot about my disease so I feel very comfortable keeping her up to date with me. 

Going back to her telling me how good I looked, I almost broke out in tears. I still might next time I see her. I have worked so hard on feeling “healthy and looking good” since I was diagnosed. This disease kicked the shit out of me (no pun intended). It has dragged so many emotions out of me and has taken me places that I did not want to go or experience. 

I am sure many of you have heard “But your so young”. Yes, I am. This disease does not discriminate! I have once again questioned my faith, myself, and have gone in and out of depression due to this disease. I have been begging to look and feel better. 

People are so selfish in this world and this wonderful woman took a look at me and made sure I knew she cares about my health, and she cares so much she can see a difference! Not only that, but it was the first time I felt like someone understood. That means more to me than anything. She understands what I have been going through, she has seen what can happen to me. This made me so hopeful in my medicine, my doctor, and myself. This was a great moment for me.

Has someone ever understood your situation so well you just went into shock? 

Update

I think it’s time for another update on everything that has been going on. In regards to my Ulcerative Colitis, (drum roll please) I have tapered down to 5mg of prednisone! TA DA how did she do it?? I have never been this low on that lovely drug before. I honestly can not believe it. My face is coming back as well. The horrible moon face is fading away.. Slowly…

I have had a bad cold all week, so I had to delay my Humira injection for a week per doctors orders. I rested all week, not pushing myself. Normally, I would just push through a cold and get on with my daily routines. This time, I am not going to risk staying in the hospital. On Thursdays I work a 12 1/2 hour overnight shift. In fear that this shift would make things worse, I ended up splitting the shift with a co worker. Having a autoimmune disease, you unfortunately have to get used to being sick most of the time since your body can not fight infections. 

I have also been on a life changing diet for over a month now, to get rid of this prednisone weight. So far, I have lost 16 pounds in one month. I am happy with my results so far, but I still have a long way to go. 

In the next two weeks, I have to take a asthma test and have to wear a heart rate monitor for two days. My doctors and I are still trying to figure out whats been going on with me. I truly   blame it all on my autoimmune disease to be completely  honest. I suppose that is something I can bring up at my CCFA support group this week.

How hard was it for you to loose your prednisone weight? Did you ever get a moon face or buffalo hump? 

What to say to someone who just does not get it

How many times have you had to remind the same person about your disease? You know they have not forgotten about it, but they insist that they know all about it. I have been pretty lucky with the people around me. They either understand my illness, or they don’t, but trust I know what is best for me.  

My friends basically know how my disease effects me, and if they have a question they ask. I am more than open with them about it, since they are my friends and I work with a lot of them. I feel like people in my family understand it and just trust me and my decisions. 

However, what do you do and how much patience can you have with someone who questions you?  Recently, I am struggling with someone who insists that just because certain foods doesn’t not hurt there stomach, that it would not hurt mine.. I have explained many times and reminded this person that they do not have what I have. Even if this person had the disease themselves, no two diseases are alike.

You reach a certain point that the people who want to help and understand, will. The people that think they know best, I can no longer share this infomartion with. This not IBS, this is not a stomach ache, this is not having a sensitive stomach, this is a disease. The best way to support someone is showing them that you trust them and prove it by finding ways to show them that you are here for them. 

I love when my friends send me articles about my disease. It shows me that they have read something, thought of me and want to show me that they are trying to understand. Sending information like that, instead of presisting that you know best about my Ulcerative Colitis is a much better appraoch. Or even asking questions is a huge compliment in my book. My advice to anyone dealing with this, is stop tryig to make them understand. You may have to cut it short with them. If they see you as being rude, reinforce that it is rude to claim you know my disease better than I do. 

Do you have certain people in your life that just don’t get it?  

Having a support system

Everyone should have a support system, or have people they can talk to about there disease. Unfortunately, some of the people you may speak with can only understand to a certain extent. 

My fiancé lives with me, so he sees me take over twelve pills a day. He also witnesses me injecting a needle into my skin. He sees how easily fatigued I get, or irritable I can be. Not only that, but sometimes he is even lucky enough to go with me to my doctors appointments!



I probably deserved it

A few days after we got engaged (ignore the moon face)

I do tell my sister and father about my IBD and keep them up to date on what is going on with me. My mom makes food when I see her that I can eat, to get me some variety. I think they do a good job understanding what I am going through, but like most people I speak to about it you can hear in there voice the relief that it is not them, or, that they wish it was them instead.

My sister and I at Christmas

I also go to a support group every other month through the CCFA. I highly recommend it to anyone who is looking for a little more support. My fiancé and I go together and it has been very helpful. It can be comical and it can also be sad, or even inspiring.

We don’t sit in a circle and complain talking about how many bathroom trips we take. (Though it is mentioned)! We talk about medicine we have tried, side effects, embarrassing moments, daily challenges, break downs, foods, symptoms, and anything else we have on our minds. It is helpful to see people going through the same challenges you are. We try to help each other out and also give awareness to our disease.

If you have a support system through your family, or support group, or both; it is important to have one. Keeping everything in makes it harder to cope with and stress is not good for people with IBD!

Who is your biggest supporter? Would you ever go to a support group? 

Taking back my life

Can anyone else agree with me that 2016 has been just a horrible year? Everyone I know, including myself has had a rough time. However, it seems that things look like they could be turning around finally. Since 2016 barged its way into my life, I have had nothing but horrible luck and the people around me.

• I was diagnosed with Ulcerative Colitis
• I have been on prednisone since January and have gained 50lbs
• I am still trying to find the right “cocktail” to manage my symptoms
• My fiancé was in the hospital
• My father was in the hospital
• My sister moved away to Maine
• My close co worker had to have surgery
• My father’s girlfriend was diagnosed with a health condition and had to have a procedure done
• I was in the hospital for nine days for pneumonia
• My mother was in the hospital
• There was a gas leak in my apartment
• The family dog has not been doing so well lately (She is a 15 year old yellow lab)

I did not think that list would ever end and I am sure you thought that as well! Alright, so I have had some bad luck. Honestly, I have been trying to cope with it for a while. All of those events happened within a very short amount of time. After I got out of the hospital, I was pretty down. They took away my Humira, until they had conformation that my recent diagnosis, was not caused by it. I wasn’t sure how long the Humira was going to last in my system, before I would start to feel my symptoms return. I was going on a full month without it, I was terrified. I really feel that Humira is working for me, I just have to taper down off the steroids a little slower.

Recently, things started to look up. I got a X-ray done and everything was clear. I had two more doctor appointments and a CT scan. Everything was coming back clear and I finally received the permission to go BACK ON HUMIRA! I had never been so excited to inject a needle in my skin, until that moment. After speaking to the Humira nurse, she wanted to know everything about my recent hospital stay. She stated they must document every time I get sick. She also explained to me once again (like I did not already know), that I can not fight infections. Okay, okay.. I know.. I did not mean to get sick.. If someone is sick around me with a seasonal cold, that could be my pneumonia. Especially with me working in geriatric care, my residents are constantly sick. So I just have to be even more cautious and realize that with a autoimmune disease, my body can not fight.

In my last post I also mentioned starting this new program to assist me in loosing my prednisone weight, and then some. So far, the diet has been challenging. I have lost six pounds in three days. Not bad! I am just happy my dear friend, prednisone, is allowing it!

My father also recently received an offer on his house that had been on the market for a while. It is not sold just yet, but the offer was made and approved now it they just have to finalize a few things and it will be done with.

So, these may not seem like a big deal to most. To me, I thought this year would never turn around. I am excited to say that the possibility is there to have a good rest of the year.

Did you ever feel like nothing was going right? How long did it last? What did you do to stay positive?

My new “normal”

Since January 19, 2016, my life has drastically changed. I guess I can say I have really gotten to know myself better in these few short months. This is due to constant stress and my limits being tested.

Now, I know it as my new normal. My new normal consists of waking up three hours before I have to be somewhere so I have enough time to get sick. Not only to get sick, but to find the strength to get ready. Many people say ” But you look so good, you would never be able to tell what your going through”.  Little do they know, it took every last ounce of energy to get myself ready and dressed for the day.

My new normal also consists of taking over ten pills a day, a self injection every two weeks, and since my recent pneumonia diagnosis, two inhalers. Due to this, I pretty much carry a medicine cabinet in my purse.

I also have to be careful when I make plans for myself, or with other people. I may think I am invincible, but I am human with a chronic disease that makes me very tired. I do need my rest and have to make sure I get it all.

Unfortunately, my normal is counting how many bathroom trips I have to take. I also have to pretty much dissect food to make sure I can digest it all.

Also, I would stop reading this now if you don’t want to know the real IBD truth.. I have to sometimes take an extra pair of pants with me if it is a bad day for me and my UC.. It’s the sad shameful truth. Although, people with IBD are well aware of this issue and some people even where depends. Luckily, I have not gotten to that point yet.

Doctor appointments have also become a new routine for me. Between follow up appointments every few weeks and blood draws every two weeks it can get overwhelming.

To most, this is a living nightmare. I am still in shock and have to remind myself that this is my life. Some people have referred this to as a “hiccup”. This is not a “hiccup”. This is a nightmare that has turned into “my new normal”.

How long did it take you to accept your new life style? 

I am struggling, but I wont stand for it!

Since January 19th, 2016 I have been struggling in every way possible. I am struggling to cope with my disease. I am struggling to recognize myself in the mirror. I am struggling to feel well. I am struggling to get my disease under control. I am struggling to do normal things. I am struggling to have energy. I am struggling fighting infections. 

Not only am I struggling, but I am failing. I am failing to feel better. I am failing to loose weight, because of the steroids. I am failing to be happy. I am failing at getting things done. 

Even though I am struggling and in my mind, failing. I am not going to sit around anymore and let something else happen. I tried to work out again, but then I got pneumonia. I failed at that too. So, as of today I ordered my new diet plan. It has changed lives and I have known several woman who have done this and it has worked wonders! I don’t think I look that bad, but I want to feel better about myself again. 

I refuse to let this disease tear me down anymore than it has and I expect nothing than wonderful things from this new diet plan that I start next week. I am determined and I refuse to “fail”. 

How has your disease effected your life?