It's OK to be Sick

 I told you in my last post I'm getting OK about how life is a journey, and how each new road we travel teaches us something new. I told you how in my journey I was forced to take a detour, the road I had to now travel was called Crohn's. It's bumpy, painfully jarring, and filled with puddles; that's the nice version. The not so nice way to describe it would be to say it's a shitty, messy road that's a pain in the ass to navigate.

How I imagine my Crohn's road looks. Wet, messy, always thinking I might fall off the edge and never knowing what's around the next curve.

But like it or not this is the road that I have been forced to take.

I didn't like it and for a long time I pretended I was still on the highway. I ignored my illness and kept going full speed ahead. Actually I probably went a little over the speed limit. I was sick, and they didn't know what was wrong with me. I was a stay home mom, but out of the blue my phone started ringing because my hobby, photography had gone viral locally. That year, while sick with an unknown illness and my 5'6" frame weighing 103 pounds I agreed to photograph 20 high school kids before the end of the season two months later. I also photographed some families, children and babies. Two years later, diagnosed with Crohn's and Rimicade no longer working, I stopped taking appointments at 117 high school kids, the last kid I took booked 8 months in advance. This self taught stay home mom grossed over $135,000 that year, by herself. She also landed in the hospital and was told if she didn't stop and slow down she was going to die.

That was my denial of my illness, my I'm not going to let Crohn's win mentality. I did exactly what I wanted to do and taxed my body past it's endurance. During that time and for many years after I tried the diets, the miracle cures, the positive thinking. I did everything but accept the fact that I have an illness, and that it's now a part of this body. No amount of my will or bulling was going to make it go away.

Acceptance of your illness is not letting it win.  It's educating yourself about your illness and being an involved participant in your treatment program. It's being your own advocate. It's taking care of yourself and meeting your bodies needs, something that you should do regardless of whether or not you have an illness. It's about being OK with 2pm naps, and not telling yourself your lazy. It's about days when you cry and feel sorry for yourself, and times when you get angry at the injustice of it all. Those are normal feelings and you are justified in having them.

My motto for my own chronic illness.

Acceptance of yourself as a chronically ill person is hard, it's something I still struggle with myself, but it's getting easier every day. In the next couple of weeks I'll talk about some of the acceptance points I listed above. We'll talk about how Crohn's has made me more acceptable of other peoples weakness. I'll even tell you some of the things I do specific to Crohn's that makes life a little easier.

Until next time Chronies.

I'm getting OK

I recently found a blog, it's a tumbler feed, called the Internal Acceptance Movement or I AM. It's about accepting who you are, as you are. I did that in high school. I remember it as clear as yesterday, coming to the realization that what the "in" group thought of me didn't matter. I realized that I was just as pretty and fun as the popular girls. I accepted who I was and I loved myself. I thought I was still being true to that self, but I haven't been. Not since getting sick.

When I was told I had Crohn's I decided it wasn't going to win. I was still going to do whatever I wanted to do. I denied it, I ignore it, I fought it. I never accepted it. By not accepting Crohn's I'm not accepting myself. Crohn's is as much a part of this body as having brown hair, brown eyes and freckles is. It's time for me to be OK with that.

Having brown hair, brown eyes, and freckles, doesn't define who I am. It's my description that people would use if they were looking for me in a crowd. It's not who I am as a person. I'm the same person if I color my hair, wear colored contacts, and use foundation. Many people say that they will not let the (illness) define who they are as a person. To some extent I think this is true, you are not your illness. I am not Crohn's, but to say that it hasn't changed me would be a lie.

It hasn't changed me in a way people can see. Unlike the use of my physical characteristics I can't be found in a crowd by saying "I'm looking for someone that has Crohn's" then have someone else say "Yea, I see her, she's over there." A chronic illness, like many of lifes unseen pains, changes you emotionally, and I'm not just talking the inner ups and downs of dealing with a chronic illness.

In order to put this into words I need to go back in time a little. I remember walking from school with a friend, this is when I was in junior high. She was telling me how miserable her life was, how it has been bad her whole life, and telling me all these really bad things that have happened to her. Only to me what she had gone through, what she was going through seemed like a walk in the park. So her parents were divorcing, mine went through a physically violent divorce when I was five. That was hard, but I went through much harder challenges before I reached this point where I was listening to my friend complain about her life.

Even listening to her I didn't feel the need to say, my life has been worse. When I through about it at home later I remember thinking that many of my peers were holding up signs that said "this bad thing happened to me" but I never told people what happened to me. I realized by searching inside myself that I didn't need to.

I had already accepted it and  believed that because of the things that I went through I was a stronger person. It happened to me, it was over, I was still alive, and I was stronger for making it through the pain. I still believe that. I believe that every painful thing we go through changes us. I believe that if we accept those painful things and learn from them we can come out the other end a stronger better person. I also believed that I was a stronger person then my friend was, because what I went through was so much worse then what she went through.

 A chronic illness IS something that happens to you, it IS painful, it SHOULD change you. It does not define who you are, but it is something that can lead to who you will be

 I believe life is a journey, using that I imagine my life as a road. It's a road with many intersections. Sometimes we choose to turn at a particular intersections but sometimes we are forced to take one that we would not have chosen. I believe that the roads we are forced to take are the ones that we are meant to learn the most from.

 When I was 33 I was cruising down the highway of life when I was forced to take a detour at the exit marked Crohn's. It's not the way I would have chosen but it was the only way left to go so I had to take it. My road didn't end, I'm still on a journey but the only way I can reach my destination is by taking this road marked Crohn's. It's a hard road to drive and I have learned many new driving skills to navigate it. As I have driven this new road full of puddles I found a new sticker for my vehicle, and it's the biggest one yet. It reads "ACCEPTANCE" and it encompasses so much more then just the Crohn's.

I have a lot to tell you about this new road and that new sticker. I can tell you that not all of what I believed after talking to that long ago friend is what I believe still, but it's hard to tell. It's hard to take something you KNOW on the inside and place it outside of yourself. It's hard to find the words to tell it just right. So I need to leave for a while and think on it, but I will be back to tell you about the things I have found on this part of my journey. Until then think about your own journey and where it is leading you.

Crohn's & Flu Season

I sort of have a love hate relationship with flu season. Being on immune suppressants I'm forced by my doctors to get my flu shot every year, so I don't ever get the flu. At least I don't think I do. The flu, a bad flare, who can tell the difference. It really all feels the same to me. As a matter of fact the easiest way to describe Crohn's Disease to someone is to tell them it's like the flu that never goes away. This is why I think it's a mistake to have  Crohn's awareness month in April. I think don't think Crohn's should have an awareness month. I think it should have a season, flu season. Crohn's is so much easier to understand if you have just had the flu.

I like it when my own family gets the flu, doubly so if someone craps their pants. For those of you that don't have Crohn's I know I sound like a bad person right now. If you have Crohn's you might say out loud that I'm a bad person, because who wants their family to feel sick? But I know your smiling just a little bit on the inside when someone other then you, or the baby poop their pants. For  a few days the flu it lets your family feel the way you have to feel every day. Lets face it when your family is around you every day Crohn's just becomes part of who you are. "I don't feel good today" is often replied to with "you never feel good." I remember once when I was in so much pain it was making me puke. I was puking into the kitchen sink, and my then 12 year old daughter brings me a towel. This is an unusually kind gesture coming from her, I was very touched, until she opened her mouth and asked if I would make her a sandwich.

When my husband and I were in marriage counselling with a therapist that specialized in working with couples dealing with illness, one of our biggest breakthroughs came when my husband got the flu, and crapped his pants. He took paid sick leave and laid in bed for two whole days complaining about how sick he felt. At counselling we were able to help him realize that I feel like that every day, but still got out of bed and went to work. He also realized that with me, being a self employed full time photographer meant I didn't get paid sick leave. I would go all day without eating because it would mean less chances of me embarrassing myself in front of clients. I couldn't stay healthy that way though and the doctors telling me to quit working now made sense to him. He went from going behind my back and telling people I was lazy and made myself sick on purpose to agreeing with the doctors and asking me to quit working.

Facebook and the Flu. I love how people posting that they have the flu tell us how many times they have puked. They never tell us how many times they have shit. Everyone has diarrhea with the flu. It's OK for them to tell us they have digested food coming out their mouth, but not ok to tell us it's also coming out their ass faster then usual. Vomit is just as gross as shit so why only tell us about one? This is why Crohn's is such a silent disease, no one wants to hear about shit. Not even the puking, pooping flu poster. From now on, to make it more acceptable for us to talk about our illness, lets ask the flu poster's how many BM's they have had today. I have to answer that question, so in all fairness I should get the chance to ask it. Then I could say "ha, ha beet you by 5!" or "Hey, you had the same number of BM's today that I've had everyday for the past 3 months!" Think how happy our poor flu poster would feel. They would feel so good knowing that they only have the flu.

I'm not saying we should be unsympathetic to our sick friends and loved ones. We need to realize that years of feeling sick has not only built up a tolerance for it, but also taught us how to cope. Think about jumping into a pool. When you 1st get in the water is freezing, but once your body adjusts it doesn't seem cold to you anymore. We Crohnies have been in the pool for a long time, while the flu people are just dipping their toes in the water.

 Friends and families of Crohn's patients who have the flu should take the time while they are sick to reflect what their loved one with Crohn's has to go through everyday. To that end I have made a few little signs for you to post on your facebook page, pin to pinterest, or hang from your bathroom door.

 



 

 

 

 



Finding Motivation

Dear Crohnies,

Have you all heard of 'The Spoon Theory' If not then it's time you read about it. It's just a way of describing to non sick people what it is like living with an energy sucking disease. Crohn's is definitely an energy sucking disease and I often refer to 'spoons' for energy because this theory has become wide spread enough that many people know what your talking about.

So if you haven't read it go read it. Then I can tell you that while on steroids I had more spoons then I could use, buckets of them. So many that I only had to sleep 3 to four hours a night and was never tired. Spoons to cook with, spoons to clean the house, spoons to plant the garden, spoons to walk the dogs. So many spoons!

Then they took the steroids away, and not slowly like they do with most people. They took them from 3 pills a day to one pill every other day for a week, to no pills at all. I went through severe steroid withdraw. I also had adrenal insignificance, not enough to throw me into crises but enough that sever weeks have gone by now since being off of steroids and I still have hardly any spoons.

It's getting better. A trip up and down the basement stairs no longer sends me to bed for the rest of the day. A big part of that is the myopathy is getting better and it's no longer such a struggle to do it. I'm back to cooking again, yes I even stopped cooking. I just had no spoons and couldn't hardly move from my bed for a while. My poor kids were begging me to cook again, as dad's idea of cooking is to grab a box of hamburger helper, and the kids hate hamburger helper.

It's not just the energy withdraw takes from you, it also takes the motivation away from you. That's harder for me, to be unmotivated, to actually not want to do anything. So that's what I'm working on now. I can't really do much about my energy levels, I'm stuck with what ever spoons I get for the day, but I can work on staying motivated.

I pick one thing to do a day and try and actually get it done. At first it was cooking again. Then I added meal planning, then grocery shopping. I do still need help with the shopping so Kurt comes with me and we do it together. Now I'm working on finishing up Chloe's room. I started it back when the histo meds first put me into remission, but then I fell into my old habit of feeling great and taking on more business then I should, then following the same old pattern I got sick again. This time we decided I'm not going back to work, and maybe that's part of my total lack of motivation. I loved my job but that's a story for another day.

The dresser I painted last year that started C's room overhaul

Back to Chloe's room. I have been picking just one thing in her room I want to get done. For example I wanted to get her pull shade done. The whole thing was still to much for me so I broke it down in little steps. 1. find a reference photo 2. edit the photo and create a line drawing from it. 3 project the line drawing onto the shade 4. color it in (this part actually took several days).

A photo of her zebra roller shade.

 

 

Next I have to work on the sewing and I am not so good at it, so it's taking me some time to find the motivation to do it. :)  I have to sew the bed skirt, it's just fabric stuffed under the matres here so I could get an idea of how the bed would look. Then that black coverlet in the middle of the bed has to be hemmed and I'm making zebra print valance to go over the long curtains so that the wire doesn't show. 

The point of this is that having just a little thing done each day has helped at least feel like I am accomplishing something. I still have to much back pain to mop floors and to me the house is not clean unless the floors are clean, so cleaning the house gives me no sense of accomplishment. Doing Chloe's room bit by bit has been very rewarding though. Watching it come together, seeing her come home from school all excited to see what I did that day. It keeps me motivated and makes it worth fighting the exhaustion.

However today's added asignment for myself was to blog, because posting what I'm doing is one way to keep motivated and moving forward. Also I was feeling guilty for not keeping up on the blog posts, and sharing what I was going through. After all it's a Diary of a Crohnie, and we have more then our fair share of bad days. When I am doing bad though it's hard just to go through it, I don't like to think about it, and writing about it forces you to do that. So I'm going to try, good or bad, to keep writing.

Love always,
D.

Hello Cankles

Cankles: The area in affected female legs where the calf meets the foot in an abrupt, nontapering terminus

This is a hard post for me to do. I'm not a partiquallry vane person, I rarely wear makeup and I have always dressed more for my own comfort then for what others think. However that still doesn't meen I want to be photographed being so puffy. But this is Diary of a Chronie, and this is what I'm dealing with right now. Maybe someone else out there is going through the same thing, they are out there surfing the web looking for answers that arn't there just like I am.

I want to throw some key words out there. Words that maybe will help people looking for others that are going through the same things they are going through. Words like disseminated histoplasmosis, itraconazole, Crohn's Disease, Budesonide / Entocort, drug reactions, steroid myopathy, and pitting edema.

The last one is the kds favorite. They call me the play doh momma. My example of seroid induced Pitting Edema. One swollen leg.

Apply pressure

Look I'm Play Doh

That's Pitting Edema.

This is me and Mr Man last halloween. I was Flo from Progressive and Mr Man was Chaos from Allstate. Yes we did have the best costumes, thank you.  I was still recovering from histoplasmosis, but I was not on any Crohn's meds. The histo meds had actually put the Crohn's into remission and I was feeling better then I had in a long time.

And me now, also I picked this one because I looked the least puffy, and the least pissed off. :)

This is after two weeks of reduced steroids. I stop steroids Monday. Doc said it's going to be 6-8 weeks before I begine to feel any diffrence or even begine to get my strength back. I have read that it's going to take months to recover.

I read the best thing for me to do is to stay as active as I can, so I don't loose anymore mustle. The more active I stay the better. So I painted this.

Isn't it cute! No I'm not having another baby, it's staged with old props from the studio. I'm hoping to sell it. I got t for Chloe's room and she loved it until I painted this.

Then she begged me not to let her keep it and not sell it, and I caved and let her have it, then I got to finsih the french dresser however I wanted to, and I wanted it blue, not pink. ;)

So that's what I have been doing since getting ot of the hospital. Trying to stay busy and keep using my muscles. I'm tired a lot an ddon't have a lot left in me to find the energy left for blogging. I take the photos, but it's hard to sit down and write. It makes me sleepy, like now, so I'm off to take my potasium, eat and go to bed in 30 minutes. That's how long  before I can lay down after taking it, because then I'm crashing. :)

In the Hospital

No cooking for me, and no good food either. I'm laid up in St Mary's Hopital in Rochester. My doctor called yesterday and asked me to come up and see him. He wasn't even taking clinic patients that day but was doing scopes, but asked me to come in at 5pm and see him at the end of the day. Seriously. He's a Mayo clinic Dr. Myo clinic! And he still always takes that kind of time to see me.

My number one, all time most importaint piece off advice for anyone dealing with a chronic illness, get a great doctor. If you don't like your doctor, fire them. There is no reason what so ever for you to have to deal with a doctor that you don't like or don't trust. I have fired 4 dotors, but now I have one that calls me in person, and takes me in after hours because he wants to physiccly lay eyes on me to see how I look and how I am feeling. I like him and I trust him and that goes a long way towards going forward with my treatments, I'm not always 2nd guessing and questioning a doctor I don't think has my best intests at heart. So please, please don't be afrade to fire your doctors and find a new one, there a lot of them out there and someone is going to be a good fit for you. Don't be afrade to look for them, and it's OK to let them know up front that they are apling for a postion to be your doctor, that just because you are there they don't just get the job. They have to earn it.

So today I am sitting in St Mary's waiting for a catscan of my belly to see why I'm having so much pain. They have done lots of bood tests looking for where the fever is coming from. They are also taking me off all steroids - at once. No weaning down. This scares me a little as I have always heard you can't do that, that you have to wean down gradually. They said beings I am in the hospital where they can moniter me they want to just take me off them. They want to see if I get my mustles back and they don't want to wait two weeks to be sure that I'm going to get my strength back. Also they think the steroids are just causing to many other things wrong with me, like the fact I also can't feel much of anything. Like I can't feel needles, which is good because my veins are turning to crap and they miss more times then they hit them. They can dig around in my arm all day and I can't feel a thing, but I also can't feel how hot water is, or if I have a sun burn so I have had a couple of burns over the last week.

I'm hoping to be out of here by Thursday but I'll keep you updated.

Copper Pennies

We finally made it though the pear salad. It was not our favorite. So the next one on the list was Melon salad. Another that is not our favorite. The watermelon jello jolly rancher taste is even almost to much for Chloe. I mix mine with whip cream and it hides the jolly rancher flavor somewhat.

Melon Salad

2½ cups boiling apple juice

1 package (8 serving size) or 2 packages (4 serving size each) watermelon flavor gelatin

1½ cups cold seltzer or club soda

1 teaspoon lemon juice

2 cups cantaloupe and honeydew melon cubes

Stir boiling juice into gelatin in large bowl at least 2 minutes until completely dissolved. Stir in cold seltzer and lemon juice. Refrigerate about 1½ hours until thickened (spoon drawn through leaves definite impression). Stir in melon cubes. Spoon into 6-cup mold.

Refrigerate 4 hours or until firm. Unmold. Garnish as desired.

Notice the heart on the top of the jello this time. That was my other huge garage sale find. Sitting on a lonely shelf were round disks with shapes, that no sane person would no what they were. I knew. I knew they were the top of my jello mold and all I had was the tulip, and now I have the other 3 for .25 cents each. A heart, a Christmas tree, and a star. Who has these things just laying around without the jello mold and why do you keep them? I guess to sell them in garage sales to crazy jello ladies. I feel like I should have blue hair right now. :)

Seriously this is how they were setting on the shelf. What sane person knows what these are.

To just go with the flow of being all blue haired old lady like today I have a new salad recipe for you. Except that it's actually a very old recipe that doesn't get around the way it used to. It apparently used to be big in picnics and pot lucks in the 60's but sort of fizzled out for more modern dishes. We were getting sick of pasta here and I was looking for a change and found this little gem in one of my .25 cent garage sale recipe books. (Yes, I have a cookbook addiction, but I do try not to buy more then one a week)

In the cookbook simply called 'Salads' they call it Heavenly Carrots, but I like the old name better, which is 'Copper Pennies'

Copper Pennies

2 pounds carrots

1 small green bell pepper, thinly sliced

1 medium onion, thinly sliced

1 can (10½ ounces) tomato soup, undiluted

½ cup vegetable;e oil

1 cup granulated sugar

¾ cup white vinegar

1teaspoon Worcestershire sauce

Salt, to taste

Peal carrots; cut into rounds or on the diagonal. Boil carrots in salted water just until tender-crisp. Drain. Toss carrots, green pepper, and onion into a bowl.

In a small mixing bowl, combine tomato soup, oil, sugar, vinegar, mustard, and Worcestershire sauce. Mix well. Season to taste with salt. Pour sauce over vegetables. Refrigerate overnight before serving.

NOTE: This salad keeps for three to four days in the refrigerator.

It is surprisingly good. So good that Kurt did not wait for it to set overnight, he actually started in on it last night after I went to bed. Then he took a big helping of it for lunch today, so I think he liked the change up from the pastas, and this is like nothing we have ever had before.

On my health front. When you feel like poo all the time you forget to do things. Like take your temperature when you don't feel good. I didn't even think about it, until last night, and I'm running a constant low fever. That combined with the night sweats scare me, because in my mind night sweats and fevers will always be histoplasmosis. I do know it can be any type of infection that got into the gut, but I'm guessing the Dr runs a histo panel today just to be on the safe side. Then probably more bloods and one of those fun stool checks.