I have no idea why getting a Remicade infusion freaks me out so much. Perhaps it is being in the hospital, or maybe the needle, or maybe the chemo going into my body and knowing there is always the possibility that I may react to the drug, negating my continued therapy with a more hopeless glance into the future that would require the dreaded surgery.
Or maybe it's just the smell.
If you follow my blog, you know I’m about 7 weeks post op from shoulder surgery. I also have degenerative disc disease in my back and I have Crohn’s arthritis and regular arthritis as well. You also know that Remicade saved my life. I have not felt so well, in heck, forever. Since I was at least 32 and that’s a long time ago. Until last week, I had forgotten what Crohn’s was like. Oh, I’d get a taste every now and then but the last six months have been awesome.
Crohn’s has flared, but thankfully, not in the way that is sending me screaming pain. It’s more of an intolerance of food, which can be controlled by not eating those things that give me grief. I have painful cramping on my right side and what I call ‘mushy gut’, which is a painful mushy feeling in my intestines that hangs around until the diarrhea starts.
What a lovely beginning to my vacation. The good news is, I am sitting in the hospital waiting for my infusion to start at this very moment. Hopefully that will put my flare out and I will be able to spend my week at the beach, in the boat, or just swimming.
What I wanted to talk about today is the psychology of Crohn’s disease. For those of you who don’t know, Crohn’s disease can strike from the mouth to the other end of your digestive system. The digestive system becomes irritated by certain (or all) foods, it causes ulcers that bleed seeking to destroy the tissue in your mouth, esophagus, stomach, small and large intestine, then the rectum. These ulcers are not like ulcers found in Ulcerative Colitis. They are deeper and the abscesses that form make tunnels from the intestine (or wherever) to other organs in the body. Sometimes, they even tunnel to the outside of the skin.
Not pretty.
I am one of the lucky ones, as Crohn’s has struck every part of my digestive system. When Crohn’s is active, I don’t feel like doing anything. For almost ten years, I would go to work, come home, and go to bed. Weekend’s were also spent in bed. Two weeks after my 2nd Remicade infusion, I felt normal for the first time in years. This was the greatest blessing anyone with Crohn’s can ask for. I was so excited I overused my body too fast causing a few breakdowns in my shoulder and back. Muscles and discs that were not used to being used, broke.
I had surgery to fix my shoulder, and I’m in physical therapy for my shoulder and my back. Yesterday, something happened that grabbed my attention and spun me around, forcing me to think about my feelings and my wellbeing. Here is the conversation that started it:
Rehab Specialist, “You will have to take things slow with your back. The skin and the muscles are so tense I can hardly move them. You must work at keeping your back straight and stiff,” accompanied by a huff of laughter.
Me, “Well, that’s interesting. Do you think I will get better?”
I could hear the smile in her voice. “I think we can do this without surgery.”
I sighed. I do NOT want to do the opiate thing again. “Good. How long will it take? I might not have a lot of time, you know.”
Rehab Specialist, “You have plenty of time. You need to slow down, let the muscles support your back not your spine support the muscles.”
“But, I have Crohn’s disease. I’m on Remicade and I’m feeling good. I don’t know how long I have before the disease comes back, so I have to live now.”
Rehab Specialist, “What do you mean?”
Sometimes I forget people don’t understand Crohn’s disease. I explained, “Some people on Remicade can stay on it for years while others build up antibodies and have to go off it. It’s a chemo drug, and aside from my hair falling out, and a few days of feeling flu-like after the infusion, it’s my miracle drug. I don’t know when or even if I will get sick again. I’ve failed all the other medications, so after this, I start losing organs. If I’m going to live, I have to do it now. I don’t know if there will be a tomorrow. At least one in which I can function.”
My Rehab Specialist got quiet as she continued my back massage. I could feel her empathy surround me like a warm blanket. This blanket gave me the strength to look deeper, something I often shy away from doing. While I am very aware that no one knows their future, most people get to plan for things. I do, too, with the one caveat of a reoccurrence of Crohn’s disease.
I can’t tell you how horrible this disease is. It is only now when I am relatively free of it that I can admit to myself just how disabling it is. The pain is incredible, the trips to the bathroom while averaging around 7-10 per day, can go as high as 30. I once had 20 ulcers in my mouth and was unable to eat to eat anything for days. I’ve had times where the nausea and vomiting were so bad I just wanted to die. The very first thing I’m getting cut out of me if Crohn’s rears its monstrous head is my rectum. Out of all the other places Crohn’s can appear, rectal issues are the worst. The pain is simply indescribable.
Thank God my husband loves me.
Warmth exploded up my spine. I SWEAR there was something flowing through this woman’s hands and I wondered if she prayed as she massaged me. Then, relaxing into her rhythmic flow, for the first time since my diagnosis, I felt empathy toward myself. I didn’t feel sorry for myself, it was a different emotion altogether and I don’t know if I can describe it, but I was suddenly filled with love toward this body that has struggled so hard to live in this physical world with so many handicaps.
It was a marvelous feeling and any judgment I had for myself drifted away under the sweeping auspices of those magical hands. It is true, I discovered, I cannot live up to other people’s expectations, but it is not my fault. I didn’t ask for this disease nor did I give it to myself. I am not always at my best, but I will give you the best that I have.
My discovery, as profound as it seemed a few weeks ago, is in reality that simple. It only took me 30 years to get here. I guess in the grand scheme of things time doesn’t matter, as long as you arrive at the destination for which you were intended.
Shalom,
Louann
Or maybe it's just the smell.
If you follow my blog, you know I’m about 7 weeks post op from shoulder surgery. I also have degenerative disc disease in my back and I have Crohn’s arthritis and regular arthritis as well. You also know that Remicade saved my life. I have not felt so well, in heck, forever. Since I was at least 32 and that’s a long time ago. Until last week, I had forgotten what Crohn’s was like. Oh, I’d get a taste every now and then but the last six months have been awesome.
Crohn’s has flared, but thankfully, not in the way that is sending me screaming pain. It’s more of an intolerance of food, which can be controlled by not eating those things that give me grief. I have painful cramping on my right side and what I call ‘mushy gut’, which is a painful mushy feeling in my intestines that hangs around until the diarrhea starts.
What a lovely beginning to my vacation. The good news is, I am sitting in the hospital waiting for my infusion to start at this very moment. Hopefully that will put my flare out and I will be able to spend my week at the beach, in the boat, or just swimming.
What I wanted to talk about today is the psychology of Crohn’s disease. For those of you who don’t know, Crohn’s disease can strike from the mouth to the other end of your digestive system. The digestive system becomes irritated by certain (or all) foods, it causes ulcers that bleed seeking to destroy the tissue in your mouth, esophagus, stomach, small and large intestine, then the rectum. These ulcers are not like ulcers found in Ulcerative Colitis. They are deeper and the abscesses that form make tunnels from the intestine (or wherever) to other organs in the body. Sometimes, they even tunnel to the outside of the skin.
Not pretty.
I am one of the lucky ones, as Crohn’s has struck every part of my digestive system. When Crohn’s is active, I don’t feel like doing anything. For almost ten years, I would go to work, come home, and go to bed. Weekend’s were also spent in bed. Two weeks after my 2nd Remicade infusion, I felt normal for the first time in years. This was the greatest blessing anyone with Crohn’s can ask for. I was so excited I overused my body too fast causing a few breakdowns in my shoulder and back. Muscles and discs that were not used to being used, broke.
I had surgery to fix my shoulder, and I’m in physical therapy for my shoulder and my back. Yesterday, something happened that grabbed my attention and spun me around, forcing me to think about my feelings and my wellbeing. Here is the conversation that started it:
Rehab Specialist, “You will have to take things slow with your back. The skin and the muscles are so tense I can hardly move them. You must work at keeping your back straight and stiff,” accompanied by a huff of laughter.
Me, “Well, that’s interesting. Do you think I will get better?”
I could hear the smile in her voice. “I think we can do this without surgery.”
I sighed. I do NOT want to do the opiate thing again. “Good. How long will it take? I might not have a lot of time, you know.”
Rehab Specialist, “You have plenty of time. You need to slow down, let the muscles support your back not your spine support the muscles.”
“But, I have Crohn’s disease. I’m on Remicade and I’m feeling good. I don’t know how long I have before the disease comes back, so I have to live now.”
Rehab Specialist, “What do you mean?”
Sometimes I forget people don’t understand Crohn’s disease. I explained, “Some people on Remicade can stay on it for years while others build up antibodies and have to go off it. It’s a chemo drug, and aside from my hair falling out, and a few days of feeling flu-like after the infusion, it’s my miracle drug. I don’t know when or even if I will get sick again. I’ve failed all the other medications, so after this, I start losing organs. If I’m going to live, I have to do it now. I don’t know if there will be a tomorrow. At least one in which I can function.”
My Rehab Specialist got quiet as she continued my back massage. I could feel her empathy surround me like a warm blanket. This blanket gave me the strength to look deeper, something I often shy away from doing. While I am very aware that no one knows their future, most people get to plan for things. I do, too, with the one caveat of a reoccurrence of Crohn’s disease.
I can’t tell you how horrible this disease is. It is only now when I am relatively free of it that I can admit to myself just how disabling it is. The pain is incredible, the trips to the bathroom while averaging around 7-10 per day, can go as high as 30. I once had 20 ulcers in my mouth and was unable to eat to eat anything for days. I’ve had times where the nausea and vomiting were so bad I just wanted to die. The very first thing I’m getting cut out of me if Crohn’s rears its monstrous head is my rectum. Out of all the other places Crohn’s can appear, rectal issues are the worst. The pain is simply indescribable.
Thank God my husband loves me.
Warmth exploded up my spine. I SWEAR there was something flowing through this woman’s hands and I wondered if she prayed as she massaged me. Then, relaxing into her rhythmic flow, for the first time since my diagnosis, I felt empathy toward myself. I didn’t feel sorry for myself, it was a different emotion altogether and I don’t know if I can describe it, but I was suddenly filled with love toward this body that has struggled so hard to live in this physical world with so many handicaps.
It was a marvelous feeling and any judgment I had for myself drifted away under the sweeping auspices of those magical hands. It is true, I discovered, I cannot live up to other people’s expectations, but it is not my fault. I didn’t ask for this disease nor did I give it to myself. I am not always at my best, but I will give you the best that I have.
My discovery, as profound as it seemed a few weeks ago, is in reality that simple. It only took me 30 years to get here. I guess in the grand scheme of things time doesn’t matter, as long as you arrive at the destination for which you were intended.
Shalom,
Louann
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