A journal of healing

Rough water

rought sea The River

Have you ever looked at someone who gets out of a handicapped parking space and watch them walk completely normal and even sometimes smoking a cigarette and wonder; “Are they really handicapped?” Or seen a large person struggle to get out and then lumber into the store and think, they should park farther away and walk for the exercise? There are so many people out there who have chronic illness that do not manifest in bloody sores or stumps for legs. But they still are impaired. I often wish that people who know me would walk in my shoes for a day and see how they would manage. I do not have outward signs of what I deal with daily, other than being a large person. But that says it all for most people. I am fat. And what always follows fat is lazy. However I am not lazy in any manner. But this is not about being fat. It is about chronic illness.

I have a friend who husband has been sick for a while. He stopped working, making his poor wife support the family of three. He stays home and often would not even get out of bed. I used to get really upset with my friend who always had an excuse for him. On top of that he smokes a lot of pot. They both smoke(d) cigarettes. He was finally diagnosed with Crohn’s but the medication was too prohibited, I guess, for him to get it. I am not close to her anymore but see her on Facebook. He was just in the hospital for surgery and I am sure it was his Crohn’s. To look at her husband, you would never know how sick he was. I was just as guilty of judgment like so many others.

I face many issues daily, including Crohn’s like symptoms. They have only diagnosed it as Inflammatory Bowel Disease, but Google that and see what you get. No one wants to talk about it. No one wants to hear how you suffer. It’s funny, women will go on and on about childbirth extolling all the gory details until in a hushed tone they will add, I pooped myself.  Even my rheumatologist did not want to hear about it. His reply was to go see the doctor I saw for my colonoscopy and stat. He prescribed Imodium.

I discovered that this is not an unusual progression for Psoriatic Arthritis. Not through scientific resources but from other people who are diagnosed with PsA. It is truly a crappy little secret, pun intended. There are a few drugs they prescribe for both issues. Who knew? I did not know that these changes in my physiology were part of the disease progression. Since I was diagnosed years ago, no one ever said I was going to have this issue and here is what to do. They still aren’t telling me what to do. Matter of fact there is little evidence based information on the topic of the link between PsA and Crohn’s.

After reading and talking to my Rheumatologist, we decided to go with a new drug called Cimzia. I have to take two shots every two weeks in my gut. They are self-administered syringes and not injectable pens. Thank goodness I do not mind shots as they are huge syringes. It could take up to three months to actually see any change in my PsA but already my gut is better. Not great, but not feeling like I have to go to the bathroom every five minutes or having a surprise when I have no place to go is a big help.

But in exchange for the things this drug can do, there is always a side effect. For me, it is charlie horses. I had this issue before when I was on Enbrel and it became constant and horrible. I tried to tell both doctors about it and neither one had a way for me to deal with it. I am not dehydrated. I am not lacking in vitamins. Once I stopped the Enbrel, they stopped. I went on Simponi last year and then in August had very dangerous reaction of it spiking my blood pressure and had to come off of it. Now, after only one series of Cimzia shots, the night leg cramps are back. I only slept last night in two hour blocks before my feet or legs would go off and wake me up. They happen in the day where my toes go up the wrong way. The circulation is fine and my ankles are skinny. (They are the thinnest thing on my body) I cannot find much about Cimzia either, not even on my user site. BTW, when you want to find out how a drug works, go to their chat boards. This is where you will really hear about issues from the people who use the drugs. This is much more realistic than the manufacturers statements. For example, I would not have known about the issue with Simponi raising blood pressure. On the manufactures sight they say it is only  a 3% chance. But, because I was aware, I was able to deal with it.  I knew it was a reaction I had from what I read on the user boards and sought medical attention. One person was hospitalized for his reaction which spiked him so high he was a candidate for a stroke.

My point is; we never know what a person is suffering from by the outward appearance. Things like depression and chronic illness and even grief are often not visible from the demeanor and appearance of someone. Often, when you live with these factors, you learn to just deal with and put on a pain free veneer.

I wrote last week about the fact that people are uncomfortable with the suffering of others. I quoted from another blog; He said. “instead of trying to cope and bury your issues, live with them. We are a society where other people’s suffering makes us uncomfortable.” He said that is why people want to help. “It is not really about the sufferer, it is about the dis-ease that suffering generates.” The author, Tim Lawrence, is speaking not about just illness, but grief and loss in general. You can find the rest of his blog at this site; http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

So yes, I am whining this morning. But I am trying to offer awareness. People deal with things in their own manner. My husband, who has arthritis in one knee, thinks he is a cripple (until he wants to play golf.) My other friends all have issues and they all deal with them in their own way. My way is to pull inward and shut off from people so I do not have to explain myself. I am not angry, I am in pain. I do not want anyone to dismiss my pain and tell me to get over it. It exhausts me and not sleeping is not going to help. It is very real. But it also very lonely and isolating.

 

 

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