Update!
My derm specialist took one look at my hands and then my mouth and had the answer. I have a systemic Candida infection and eczema/psoriasis, he said it doesn't really matter which one it is, that has eaten the cuticle away from the nail which is what is giving me chronic infections in the upper joint of each finger.
All due to Remicade OR it could be I had latent genetic leanings in this area. I go back in three weeks to check my progress. He said it will take months to heal, but hey, at least I know what is happening and he said no need for more antibiotics. Instead, he has me on oral antifungals, topical antifungals and antibiotics. Keeping my fingers crossed! Oh, and no Remicade or immune depressants unless it gets so bad I can't stand it. Next stop is my gastroenterologist. I am not so sure he will go along with the plan, but I can try.
cont.
Crohn's disease and depression go hand in hand. Why? Because having a chronic condition wears on your mental health. The second reason is vitamin intake. Have your doctor check your vitamin levels if you are feeling down. You may need a boost of some B vitamins. I take supplements of B and B12 in addition to a multivitamin. Sometimes I even manage to digest them!
But there are other reasons aside from the physical. I went through a period of time feeling quite hopeless and it was only a few weeks ago. Finger infections, inability to treat Crohn's disease due to infections, fear of the unknown, being uncomfortable at work, accidents, having to monitor how much I eat and drink, thinking twice about what I put into my mouth etc etc.
Remicade was my miracle drug and I can no longer take it. Just the thought of being medication free scared the crap out of me. I had no idea what was in my future. Well, my future is now. And it's not so bad. I spent so much time being afraid and depressed I forgot to see how blessed I am. I know how trite it sounds, but it is still truth. Be mindful of where you are. Cast your attention outside and listen to the birds, help someone else, do anything you can to take your mind off yourself. Google mindfulness. It works.
I am truly thankful I get to see the specialist tomorrow.
One of the reasons I blog about Crohn's each Wednesday is so I couldn't hide myself away in a corner. I could see me curling into a shell, embarrassed and afraid. So, I decided to put myself and my disease out there. No feelings of shame here. None at all. Well, maybe sometimes. I'm not perfect you know. If I make plans and can't come--so be it. You think I'm unreliable? That's your problem, not mine.
Depression is a close friend and I know exactly what steps to get me there and how to get myself out. I do take an antidepressant which helps some, but even on an antidepressant you can talk yourself down the depression/anxiety road. So, what to do to rid myself of the fear?
1. Face it--stare at it--overcome it. You know the symptoms. Over this past weekend we met my niece and nephew at a trout pond. As soon as I got out of the car I scoped the area. I couldn't find a bathroom. My niece offered me the use of the bathroom in their trailer, but it wasn't something I wanted to do. I asked my nephew and he didn't know where a port-a-potty was either. Finally, my husband found one and it wasn't that far away. I immediately relaxed. My niece was a bit puzzled at my insistence at finding a close bathroom. I had to explain it was my disease and let it go at that. Now, I could have let myself get all weepy about how horrible it was to have to tell someone I needed a bathroom nearby. Nope. Best to face it, explain it, and move on with life. Sometimes you have to pick yourself up.
2. Exhaustion. Crohn's makes one weary. I still have trouble admitting when I am tired. I see it as a sign of weakness and this dates back to my childhood. I have trouble napping, but I take time to rest. For me, sitting in front of a computer typing away is very relaxing. Last night I snuggled up against my husband. It was only 8:30 in the evening, but something clicked. Maybe it was the blanket--maybe it was just love. But I got toasty warm and couldn't keep my eyes open. I fell asleep and woke up an hour later. It was THE BEST nap I've taken in years.
3. I used to be of the mindset that all dis-ease starts in the mind. I don't think that anymore. And my goodness, what a heavy load to place on oneself. To those that insist it is the truth, maybe you're more spiritually advanced than I am or whatever.
What I do think is that in our DNA lie the seeds of Crohn's or UC. Then, in our lifetime we are exposed to something (possibly even just stress) that switches the gene on. After that, there's not much you can do about it except find a medication that will help, keep your stress low, and ask for help when you need it. Oh, and watch what you eat.
4. Be kind to yourself. I am the queen of self deprecation so I have to be careful not to use it so much I bring myself down. It is OK to be kind to yourself. Self-talk is important. When your mind starts chattering away about how tired you are, how stressed you are, how you need to always know where a bathroom is, at how you have to carry an emergency supply kit in case the worst happens, the wonderment: go to the hospital--don't go to the hospital. How long will the pain last? That nagging, clawing, pain that keeps you from thinking about anything else because you hurt so bad.
This is what I tell myself. Self? Go home. I don't care if the job is getting tired of you being sick. GO HOME. Apply for disability. Keep a calendar and when you go in front of that judge tell him what it's like to crap your pants with a client standing in front of you. Let them know how hard it is to get out of bed in the morning. Let them feel and suffer along with you when the pain is so bad you'd rather die than live out the night.
So be nice. Seriously, you deserve it.
5. When depression does hit, let it wash over you like a wave. Go inside yourself and follow it to find out where it leads you. I believe depression is anger turned inward. Maybe you don't have the strength to fight another battle. Maybe you have pushed yourself too hard or you expect too much of yourself. Whatever it is, find it and acknowledge it, then give it to a higher power. With a sincere heart ask that the depression be lifted, admit you can no longer carry it then give it away. Heck, if you don't believe in a higher power then give it to your best friend to carry for awhile. I know it sounds too simple, but I am talking of normal depression. The one that hits everyone now and again. If you are facing a severe depression, physical in nature, then it is time to ask for help. There is no shame in that. Depression, like Crohn's disease, needs to come out of the closet.
So often I hear about young ones who experience a lovers' loss over a chronic condition like Crohn's disease. I am here to tell you that you can have love and support from someone who loves you as much as you love them. Never sell yourself short. I know it hurts. Email me if you can or hit my contact page if you want to be anonymous. Don't give up on life. Not yet. Please?
Those are my tips for today and there is a wealth of information in them. Just know you are not far away from my heart. Crohn's disease is a hard road to take, but one worth walking. Reach out to someone else. You may just find your purpose and your passion.
My derm specialist took one look at my hands and then my mouth and had the answer. I have a systemic Candida infection and eczema/psoriasis, he said it doesn't really matter which one it is, that has eaten the cuticle away from the nail which is what is giving me chronic infections in the upper joint of each finger.
All due to Remicade OR it could be I had latent genetic leanings in this area. I go back in three weeks to check my progress. He said it will take months to heal, but hey, at least I know what is happening and he said no need for more antibiotics. Instead, he has me on oral antifungals, topical antifungals and antibiotics. Keeping my fingers crossed! Oh, and no Remicade or immune depressants unless it gets so bad I can't stand it. Next stop is my gastroenterologist. I am not so sure he will go along with the plan, but I can try.
cont.
Crohn's disease and depression go hand in hand. Why? Because having a chronic condition wears on your mental health. The second reason is vitamin intake. Have your doctor check your vitamin levels if you are feeling down. You may need a boost of some B vitamins. I take supplements of B and B12 in addition to a multivitamin. Sometimes I even manage to digest them!
But there are other reasons aside from the physical. I went through a period of time feeling quite hopeless and it was only a few weeks ago. Finger infections, inability to treat Crohn's disease due to infections, fear of the unknown, being uncomfortable at work, accidents, having to monitor how much I eat and drink, thinking twice about what I put into my mouth etc etc.
Remicade was my miracle drug and I can no longer take it. Just the thought of being medication free scared the crap out of me. I had no idea what was in my future. Well, my future is now. And it's not so bad. I spent so much time being afraid and depressed I forgot to see how blessed I am. I know how trite it sounds, but it is still truth. Be mindful of where you are. Cast your attention outside and listen to the birds, help someone else, do anything you can to take your mind off yourself. Google mindfulness. It works.
I am truly thankful I get to see the specialist tomorrow.
One of the reasons I blog about Crohn's each Wednesday is so I couldn't hide myself away in a corner. I could see me curling into a shell, embarrassed and afraid. So, I decided to put myself and my disease out there. No feelings of shame here. None at all. Well, maybe sometimes. I'm not perfect you know. If I make plans and can't come--so be it. You think I'm unreliable? That's your problem, not mine.
Depression is a close friend and I know exactly what steps to get me there and how to get myself out. I do take an antidepressant which helps some, but even on an antidepressant you can talk yourself down the depression/anxiety road. So, what to do to rid myself of the fear?
1. Face it--stare at it--overcome it. You know the symptoms. Over this past weekend we met my niece and nephew at a trout pond. As soon as I got out of the car I scoped the area. I couldn't find a bathroom. My niece offered me the use of the bathroom in their trailer, but it wasn't something I wanted to do. I asked my nephew and he didn't know where a port-a-potty was either. Finally, my husband found one and it wasn't that far away. I immediately relaxed. My niece was a bit puzzled at my insistence at finding a close bathroom. I had to explain it was my disease and let it go at that. Now, I could have let myself get all weepy about how horrible it was to have to tell someone I needed a bathroom nearby. Nope. Best to face it, explain it, and move on with life. Sometimes you have to pick yourself up.
2. Exhaustion. Crohn's makes one weary. I still have trouble admitting when I am tired. I see it as a sign of weakness and this dates back to my childhood. I have trouble napping, but I take time to rest. For me, sitting in front of a computer typing away is very relaxing. Last night I snuggled up against my husband. It was only 8:30 in the evening, but something clicked. Maybe it was the blanket--maybe it was just love. But I got toasty warm and couldn't keep my eyes open. I fell asleep and woke up an hour later. It was THE BEST nap I've taken in years.
3. I used to be of the mindset that all dis-ease starts in the mind. I don't think that anymore. And my goodness, what a heavy load to place on oneself. To those that insist it is the truth, maybe you're more spiritually advanced than I am or whatever.
What I do think is that in our DNA lie the seeds of Crohn's or UC. Then, in our lifetime we are exposed to something (possibly even just stress) that switches the gene on. After that, there's not much you can do about it except find a medication that will help, keep your stress low, and ask for help when you need it. Oh, and watch what you eat.
4. Be kind to yourself. I am the queen of self deprecation so I have to be careful not to use it so much I bring myself down. It is OK to be kind to yourself. Self-talk is important. When your mind starts chattering away about how tired you are, how stressed you are, how you need to always know where a bathroom is, at how you have to carry an emergency supply kit in case the worst happens, the wonderment: go to the hospital--don't go to the hospital. How long will the pain last? That nagging, clawing, pain that keeps you from thinking about anything else because you hurt so bad.
This is what I tell myself. Self? Go home. I don't care if the job is getting tired of you being sick. GO HOME. Apply for disability. Keep a calendar and when you go in front of that judge tell him what it's like to crap your pants with a client standing in front of you. Let them know how hard it is to get out of bed in the morning. Let them feel and suffer along with you when the pain is so bad you'd rather die than live out the night.
So be nice. Seriously, you deserve it.
5. When depression does hit, let it wash over you like a wave. Go inside yourself and follow it to find out where it leads you. I believe depression is anger turned inward. Maybe you don't have the strength to fight another battle. Maybe you have pushed yourself too hard or you expect too much of yourself. Whatever it is, find it and acknowledge it, then give it to a higher power. With a sincere heart ask that the depression be lifted, admit you can no longer carry it then give it away. Heck, if you don't believe in a higher power then give it to your best friend to carry for awhile. I know it sounds too simple, but I am talking of normal depression. The one that hits everyone now and again. If you are facing a severe depression, physical in nature, then it is time to ask for help. There is no shame in that. Depression, like Crohn's disease, needs to come out of the closet.
So often I hear about young ones who experience a lovers' loss over a chronic condition like Crohn's disease. I am here to tell you that you can have love and support from someone who loves you as much as you love them. Never sell yourself short. I know it hurts. Email me if you can or hit my contact page if you want to be anonymous. Don't give up on life. Not yet. Please?
Those are my tips for today and there is a wealth of information in them. Just know you are not far away from my heart. Crohn's disease is a hard road to take, but one worth walking. Reach out to someone else. You may just find your purpose and your passion.
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