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.

In the beginning…….

Sarah Keturah

Sarah Keturah

When I was first diagnosed with Rheumatoid Arthritis over two years ago, I was scared out of my mind. I worried that I would die early, my body would one day be filled with replacement joints, and that my quality of life had just gone downhill 100 fold.

With that, a variety of feelings came flooding in. I didn’t ask “why me?” but I did feel anger towards other people. I felt anger that they didn’t know what I was going through, that they complained about hangnails, colds and headaches and I felt anger that lots of people had advice for me. I also felt sadness of course that the life I once lived was now difficult and painful. And it wasn’t just any kind of pain, it was the kind of pain that had me crying several times a day. It was the kind of pain that made me think that child birth might be a piece of cake. It was the kind of pain that made me wonder how many months of this I could handle, and was my life over? My daily routine now consisted of a plethora of medicines with terrible side effects, some that made me scared I would one day have cancer.

Even before I was diagnosed, I pored through the Internet in search of what was wrong with me. I felt like I was dying. Surely I must be, I thought because my body every day was loosing functions. I could no longer turn my head or brush my teeth with ease. If I fell on the floor, not only would it cause excruciating pain, but I would be at a loss of how to get back up. I remember when RA was first starting, I was in a jewelry store and I had crouched down to look at some jewelry. I lost my balance because my knees were starting to be affected and when I reached the ground, I avoided putting any pressure on my wrists because they couldn’t bend or else they felt like they had just been broken. So here I was, in a public place and in pain, wondering how in the world I was going to get back up. And this was just the beginning, I wasn’t even at my peak of the debilitating stage RA can put you in. It was a couple of months later that sitting up from the couch required a helping hand. I was young and fit and yet my body was deteriorating at an alarming pace, swelling in all of my joints and developing noticeable bumps. Even my shoulder bones were poking out. When I woke up in the morning, it felt like I had smoked packs of cigarettes. My ribs constantly hurt. Sleeping was nearly impossible. My rib pain and other joints caused all positions except for lying facing straight up, too painful to bear. I woke up with every turn and twist. I couldn’t even stand the feeling of a blanket on my toes because the weight of the blanket on those small joints was unbearable. Am I exaggerating? Not in the least!

I had begun a new job, one in the industry and I was leaving my old one. My old job could have possibly started the inflammation process. I had been cutting cardboard for 10 hours a day using an Exacto knife. Hour after hour of constant pressure had turned my fingers into swollen sausages. It may have been just a coincidence, but in my opinion, this job had something to do with the onset of my RA.

In the first weeks of my new job, luckily my hands were able to rest. Not only were my fingers swollen, but they had eczema of some sort all over and I kept them hidden. The eczema was itchy and painful. I kept my illness hidden, thinking each day was my last. When I drove in the car in the morning of L.A. traffic I feared getting in an accident. Was I even capable of turning the steering wheel? My head certainly couldn’t turn easily any more. At night when I left my car, I didn’t even bother looking back and checking my surroundings. I wouldn’t be able to run or fight back. I felt as vulnerable as a newborn baby.

At this time I didn’t even have insurance and I was going to a local clinic. The doctor, who had a difficult time communicating with me, (English wasn’t her first language) finally prescribed Prednisone when I was on my last days of even being able to brush my teeth. Thankfully, this drug turned my life around and I was able to function a little better for some time before I got insurance and started seeing a Rheumatologist.

I began to talk about my disease to those who were close to me because hiding it was stressful and difficult. It’s hard to explain when you’re 30 why you can’t do something if you look perfectly healthy.

I realized soon enough that people just didn’t get it. Even in the very beginning as I became less functional and told my husband that I was looking into support groups on-line and I thought I had either Lupus or RA, his reaction was unhelpful. He didn’t want me to join a support group if I didn’t know what I had. It was as if he could just ignore what was happening and somehow it wouldn’t exist. I’m certain there was a part of him that didn’t believe me and felt I was making this disease manifest.

Time went on and my husband began to finally realize I had a real disease and it wasn’t in my head. I think all of my family “gets” that I have Rheumatoid Arthritis. Unfortunately, unless they read about it thoroughly this disease varies from person to person, so much that even the person going through it doesn’t really know what to expect on a day to day basis.

I imagine that it’s not just Rheumatoid Arthritis that has this type of variety. I think that’s one of the most important aspects of learning about a person’s disease is, is to know that just because you read about it doesn’t mean you truly understand it. Even as part of a support group, I realize that just because I have Rheumatoid Arthritis, doesn’t mean I know what another person is going through.

If you would like to be a contributor, please send your story to: sarahketurah@gentlehugscafe.com

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