Toxic People

It could be your co-worker, a childhood friend, your mother, or your husband. But at least with your mother and your husband, you’re willing to bend a little to make things work. Toxic people are hard to avoid. That bully you remember in junior high, that blind date that was high on cocaine and drove like a maniac, or that angry boss that curses at you.

Having an auto-immune disease however, puts things in perspective. You realize that you hate feeling sick and whatever you can do to prevent feeling sick, you’ll do it. you realize early on that your disease puts you at a new vulnerable level. you can no longer tolerate that angry boss just because you have to. In doing so, you will have more flares and increase the destruction of your body at a faster rate. You simply can’t “afford” to have him as a boss. And so you leave your job in hopes of finding better surroundings. You realize early on that the friends you had all these years may not even put up with your disease and they might leave you or you might leave them because they are too shallow and consumed with themselves to even care. As time goes on, your group of friends becomes less and less and you avoid stress whenever possible. You learn to make new friends, based on personality only. Are they sweet? Are they kind? If they are, you stick to them like glue and hope that they stick around when you go through a rough patch because you might not come out of your cave for some time.

(due to privacy, I have made a few modifications)

Years ago, I had a co-worker, that over time, I grew to know. In the past, she had rubbed me the wrong way. She made days, weeks even, feel like poison. I am a sensitive person with a sarcastic personality but her personality made me feel raw, like I was chewed up and spit out. On her bad days, she would wear her emotions on her sleeve and if you approached her, you would feel her anger penetrate your soul. I learned to tread lightly and not approach her for any reason, unless she was in a good mood. Sometimes I was wrong, and I’d regret having walked into her office to grab something I needed. When I was near her, I felt fear.

Over the years I have learned to put things in perspective, and find the sympathy within myself to realize that we’re all human.  I wasn’t raised how she was raised, and I was born with my personality while she was born with hers.  I realized that though she would bite, there was not much that I could do. She cried easily. Her life was hard and I felt for her. Eventually I learned her cues on when to talk to her, what to say and when to say it. It was as if I was a dog and she had trained me, without realizing, to feed her so she wouldn’t bite.

Eventually she changed.  Maybe she saw a psychologist, maybe her life became easier, either way, life on my end became easier. The change was apparent to me. She was happier. Just like she wore her anger on her sleeve, she wore her happiness on her sleeve as well. And it was on those days that I felt like maybe she could be a friend. I stopped fearing her and started calling her on long walks on the weekends to see how she was doing. Talks turned into long conversations and soon I had completely forgotten that I had ever been afraid of her.

Until one day.  I had been invited to a party at her house. I considered inviting a sweet friend of mine, but I thought twice. I wasn’t sure why I hesitated in asking my friend to join me. Was it because we were still new friends? Was it because her English wasn’t as good as it could be, which made conversations more of a challenge? No. it was none of those reasons. I realized it was because I didn’t want to worry about her. She is sweet and I didn’t want to worry about her feelings. After all, I had my own feelings to worry about.

Honestly though, I hadn’t put two and two together. When I arrived, I was a little surprised that there weren’t that many people. Perhaps the long drive had kept people away. That’s what I rationalized. But there was a part of me that wondered if it were something else.

I thanked her for inviting me over.  I’m guessing she was two sheets to the wind and had become her raunchy, rancid self, which will exclaim profanity, become loud and scary, and flippantly say things that she won’t regret but will leave other people bothered for years. This can be fun if you’re in her corner, like you’re on a live comedic show. But if you’re not, you better prepare yourself for the mind twisting lashings up ahead. Or perhaps I was being too sensitive?

She told her husband, who is subservient by nature, “when you’re a guest at someone’s house, you bring something.” But it was said in a way, if you can imagine, in a harsh, loud, and angry tone, for all to hear. She is the type of person who will say she is joking but yet, there is truth to every joke. I felt like that dog again, cow-towing to her every demand, giving her the reins to be boss, being subservient and putting up with her less than humorous jokes. I had in fact, asked what to bring, which maybe she had forgotten.  Her response on the phone was, “we have so much food and drink, please don’t bring anything!”  It was as if she was the bully in the schoolyard again. Whether it was a joke or not, I immediately turned red and felt like a child, fearful of the bully near me and letting her have her way. I lost my appetite and no longer wanted any food, or anything for that matter. I realized that even though we had come so far as friends in the past months, that her behavior, whether correct or not, made me feel stressed and fearful. She was toxic and I could no longer really be her friend. Maybe her behavior was totally fine for other people, but that didn’t matter. What mattered most was how it made me feel. I have a disease, a very serious disease, and I could no longer afford to feel stress because a person made me feel embarrassed, subservient and upset. At least, not if I didn’t have to.

When I had a chance, I confronted her and she acted as if she had no idea that she had even rubbed me the wrong way. I asked her if she was upset with me.  Her reaction of course was not kind. She got angry and loud enough that others could hear if they were listening and said, “I am sorry you are so sensitive. I am sorry you aren’t having a good time.” And she laughed at the fact that I had been upset ever since her comment. I realized there was no getting through to her so I had few choices. One choice was to make a scene and leave. Well, I wouldn’t make a scene but she would…. Or I could suck it up and try to get us to a place where at least we were getting along. And so I told her, “I’m not upset. I just thought you were upset at me. I was embarrassed.” It was a partial truth so that I could make it through the rest of the night. She told me she wasn’t upset at me and we let it go…or at least, I made it seem like I let it go. In truth, I didn’t let it go. I decided right then and there that I had been mistaken about our friendship. For better or worse, my personality couldn’t handle her personality. Perhaps in the past, I could have handled her harsh sarcasm and almost bi-polar mood swings. But my new self, my protective, ace-bandage wearing, pill taking, supplement researcher, professional, artist self, could not handle her personality in the long-term.

Will I be kind to her or people like her? yes. Will I always tip-toe around people like her? yes. Will I do my best to avoid people like her? yes. Life is too short. I’d rather have the sweetest, kindest, friendliest people around me or none at all. If I were strong and healthy, perhaps I would try my best to work through this. But I’m not. I simply can’t afford to have toxic people in my life.

When your disease gets you down

Pain can bring out depression

Pain and Depression can go hand in hand

When it comes to chronic disease, we all have setbacks. Since last Wednesday I’ve been experiencing a flare. It’s honestly the first that I’ve had in a very long time that was quite this bad. It could be due to stress or medications or both. Compared to how I used to feel before alternative medications, this flare is a breeze. I can still lift my shoulders, tie my shoes and walk without wincing. Flares can vary so you never know what you’re going to get. For me, having Rheumatoid Arthritis can sometimes feel less of a joint disease and more of a systemic disease. For those of you that don’t know, RA can affect the organs just as much as the joints and it can mimic other diseases like Lupus.  I can see what’s happening to my joints….my fingers get more swollen than usual, but when it comes to my organs I can only guess what’s happening.

These last few days I’ve been getting up in the morning and feeling like I’ve smoked a pack of cigarettes. I don’t even know what that would feel like but I’m guessing this feeling is similar. There’s a sense of congestion and heaviness, accompanied with some discomfort to breathing especially if I bend over and especially when I first get up. Just like my joints, this feeling lessens as the day goes on. There are times that it feels like my heart is beating harder or having trouble….could it be Pericarditis? I simply don’t know. And there are moments when my sides have dull aches as if someing inside me is a bit more swollen than normal. Times like these I can only guess what’s going on. Without insurance, there is no way of knowing without going to the doctor and paying an arm and a leg.  Seeing that I can barely afford my supplements on my own, I simply can’t afford a doctor’s visit. Besides, I know the answer to the problem…..reduce the inflammation in my body and everything will be solved, including my sour mood.

If only it were that easy. I could take some Prednisone which sits in my cupboard. But after a year of trying to get off that stuff, no thanks. I’d rather not feel even more moody than I already feel which is what Prednisone would do to me.  Flares are bound to happen from time to time. I have been lucky to avoid having a flare for the past six months or so. I’m also lucky that this one isn’t all that bad. When I did have a doctor I had the same complaints: chest pain and congestion, rib pain, organ pain, and just about everything and everywhere hurt. Knowing that I have the least amount of pains now that I don’t have a doctor, it makes it all the more simpler to not worry and just keep going on with my life. A flare will eventually subside.

Extreme tiredness is another problem that accompanies most chronic diseases. It doesn’t seem to matter how many hours of sleep I get, I’m still tired. I can say however, the more I sleep, generally the less pain I wake up with. Depression is the other thing that pulls me down. People close to me try to perk me up and they say, “Don’t let yourself get depressed.” It’s hard to have that kind of self control. You go to lift something and you realize you don’t have the strength. You plan a day of activities to realize you don’t have the energy. You have aches and pains and have no way of relieving them. People want to spend time with you but you don’t want to spend time with them…..you are at a loss for words and feel like you might fall asleep in their presence. You find yourself stuttering. You spend more than your share of time in the bathroom to accomplish nothing. (Inflammation of the intestines can make you very constipated). People cook you food and you barely eat. I think faking the way I really feel takes its toll and adds to the depression. People ask on the phone, “How are you doing?” You answer, “Fine and how are you?” But the real answer would depress other people. “I feel extremely tired and sad that my weekend was taken away from me.” People don’t want to hear that so you hold it in and take one for the team, the chronically ill team that is.

What’s it like to have a chronic disease? Well, honestly it really takes it’s toll on your body and spirit,  especially when you’re going through a flare. The pain, the medications, the tiredness….none of it is easy. I can say that since I’ve been treating myself with alternative medications I feel WAY better than before, when I was on chemotherapy drugs and steroids. But even this path isn’t easy for reasons like expense, feeling alone on this particular path, and the amount of pills I have to take can be annoying and tiring.

At first I thought twice about writing an entry like this. After all, it can make people feel uncomfortable. But then I thought, why can’t I just be honest? Why spare other people and hold in these emotions?  Is this too much information? Perhaps it is but I don’t care. At least you know when you come to my blog you’ll get the truth and the real me.  Thanks to all out there, who visit.  You are my support and I appreciate you.

Is Rheumatoid Arthritis OUR fault??!! (A venting story)

Normal Hands vs. Arthritic Hands

Normal Hands vs. Arthritic Hands

Written by: Lisa (anonymous last name) Edited by: Sarah Keturah

I have a wonderful group of well-meaning friends. They all know about my condition, which my mother and my mom’s mom also have (my grandma had all her knuckles replaced several years ago and has severely deformed hands).

Nevertheless, I keep getting these emails and such about WONDER DIETS that will PURGE MY SYSTEM of the RA. How if I eliminate fungus (mushrooms, antibiotics) I will heal. How if I give up this or that or balance my chi or add yin to my yang or take up underwater basket weaving that I will have a miraculous recovery. PUH-LEEZE!

Did I drink too much Diet Coke? Was it my years of smoking cigarettes in college? I didn’t start eating red meat until I was in my 20s. Maybe I never should have started?

I don’t know. I’m just so FRUSTRATED. I don’t want to waste time on wondering WHY or HOW the RA happened, because now I have it and I have to live with it.

I am all for trying anything to help. Hell, I’m even trekking to Montana to see a Native American shaman this summer to see if he can pull the negative stuff out of me :-)

But I feel like people are looking at me with question marks in their eyes, peering into my soul, wondering *if* anything is wrong with me.

Maybe this irritates me so much because I wonder the same things, too. Sometimes I wonder if anything is wrong with me.

I see my swollen hands and have dreams about pain when I’m asleep. When I have flares I cry. I feel defeated by RA. But I can’t help but wonder … what is it?!

I am sero-negative so far (dx’d six months ago). My sed rates were up, but then went down at my last test. I want PROOF. I just want to know WHAT IS WRONG WITH ME.

And I want the people I love to quit questioning it. I don’t have the energy to try every stinkin’ diet, fast, medication or method. I am TIRED (the doctors call it “fatigued”) and I am SORE and I just want to make it through the day and change my baby’s diapers and get dinner on the table and clean clothes in the drawers.

Can’t I do that in peace, without having to wonder if I CAUSED MY RA?

Grrrrrrrrrrrrrrr.

Love you all, my kindred spirits.

Soft hugs all,
Lisa

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