Monday, May 31, 2010

Looking for the bright side of life...

I have been in a pretty bad mood the last couple of days. It started yesterday morning. The bed was just so comfortable and we did not have anything to do until one in the afternoon, so I slept in until noon. I am not sure if it was the fact that took my anxiety meds a few hours later than usual or it was the RA, but I woke up nauseous and with a low fever. Plus my right hand is completely swollen and achier than usual.

We went to lunch with some friends and their completely adorable newborn, which was the bright spot of the day. Between holding Maddy and getting to see Angela, who I am used to seeing at least four days a week at work, I was distracted and happy. For that ninety minutes I almost forgot how bad I felt and how uncomfortable the sudden hot weather was.

Instead of running the errands we had planned on, Rommel ended up taking me straight home and placing a fan directly on me while I crashed on the bed. I tried to read, but ended up just closing my eyes and falling back to sleep for two more hours.

I had no appetite when I woke up, but Rommel and I decided to slowly walk to the grocery store for some crackers and Starbucks iced tea. It felt good to get moving, but I still felt like I was burning up and just felt off in general.

After sleeping all day, I could not get to sleep last night and just tossed and turned instead. It was nice that the temperature outside dipped quite a bit, so I was able to snuggle under the covers with the window open though.

I left for work this morning while Rommel was still asleep since he has Memorial day off. I just wanted to stay in bed with him, but I knew I could not call in because we are short staff as it is and I had a pile of paperwork waiting for me.

I have pretty much spent the last eight hours in the upstairs office by myself (typical Monday) and trying not to be too bitchy when someone asks me for something. I have been trying to cheer myself up and remind myself how lucky I am, etc, but then I to go back to my work writing or typing which sends shooting pain through my hand.

Rommel and I might walk to the bakery when I get off work and pick up something special for the holiday. I may be exhausted and hate the idea of walking at the beginning, but walks almost always put me in a better mood.

Saturday, May 29, 2010

Exercising with the Wii ... Pros and Cons

My husband bought the Wii when it first went on the market a year or two ago. We had glorious intentions of exercising with the Wii Fit and losing weight while having fun and spending loads of quality time together. That didn't happen. Instead we decided that my parents might benefit from it since it was just gathering dust at our house, so we sent it to them over the holidays.

About a month later I was diagnosed with RA and quite a few of the physical activities I used to do have become painful for me. Since I have not been as active, I have put on weight, which makes the pressure on my joints worse and there is more pain. It's a vicious cycle.

I was speaking to my husband about how I could lose weight when some days I am too fatigued or my feet are in too much pain to walk. That's when he surprised me with a new Wii. He apparently got a good deal on the new black one they just released and bought some used games and a used balance board at the resale place where he had credit from trading in other games.

I was really skeptical, but he convinced me that it did not dent our bank account too badly. Plus I know that he was doing all of this because he loves me and wants me to be healthy.

These are the pros and cons for me when using the Wii to exercise:

Pros -
  • It's exercise. Even when you are not using the "exercise" games, you are moving around, which is better than watching tv or something of that nature.
Cons -
  • The Wii Fit tells me how fat I am every time I do the evaluation. No, I'm sorry, it tells me how "obese" I am. It's not that I don't agree, it's that I do not need a cartoon pointing out how I am on the obese end of the scale. Worse yet, they make your little Wii person rounder after you weigh in.
  • You are not supposed to use the Wii balance board while wearing shoes, but I cannot stand on a hard, flat surface without shoes. I tried to use the balance board several times without wearing my tennis shoes and after about ten minutes, my feet were in such pain that I could not do anything the rest of the day. So I wear my tennis shoes now, but it seems to be hard on the balance board and I am wondering if it will last very long. So it might end up costing us more money.
  • Some of the games want you to run. One of my seven circles of hell (if I was a bad person of course) would be a fast running treadmill with no off button. Walking, fine. Walking fast, fine. Running, you're f*****g crazy!
  • It may lead to the death of my husband by my hands. I am not an athletic person, but I can be a competitive person and these games bring out the worst in me. I absolutely hate to see him do better than me and can get pretty nasty when he does. I will even bite my lip through the pain to beat him. I don't like this part of me because I am not like this in any other aspect of my life. I am always happy to see him do well, but if he beats my hula hoop score, I will be forced to bring him down.
I don't know if the cons outweigh the one pro, but I try to use it when I am able to. Or at least until I break and kill that stupid cartoon scale.

Thursday, May 27, 2010

Another appointment, but definitely an important one.

As soon as the doctor prescribed plaquenil for my Rheumatoid Arthritis, he explained that I needed to have my eyes checked. The most frequent side effect of plaquenil is developing deposits on the retinas which can cause problems with vision that may or may not be reversable.

I took my time making an appointment because after seeing so many doctors over such a short period of time, I was getting more and more anxious with each one. So I waited until things calmed down a bit and made an appointment on a week where I did not have anything else going on. I had been taking the plaquenil for about three months at that point, so if I was going to develop deposits from it, they should be able to tell by now.

I am happy to say that my retinas look great; the doctor even let me see the retinal mapping and went over it with me. I will need to go back every six months, but the doctor does not think there will be a problem in the future. I do not mind having to go back that much; I would rather be on the safe side.

The weird thing is that my vision has actually gotten better. I have been wearing glasses since third grade and can barely see my hand in front of my face. My vision has been pretty much the same for the last ten years. I do not think it has anything to do with the plaquenil but it was definitely interesting.

Monday, May 24, 2010

Feeling Ambitious

I have been pushing myself more than usual over the last couple of weeks. Some days I have a decent amount of energy and want to take advantage of it by getting out in the garden or trying to get the house a little more organized. Some days I have no energy, but if I am going to be achy or in pain at the end of every day, I would rather feel like that for a reason or at least believe that was the reason.

I only had to work half a day on Tuesday because of the upcoming holiday and the crazy way my company handles it. Instead of heading out to the backyard, I decided to hang out at the bookstore for awhile and grab a new book that I was really excited about. I bought my iced tea and found a seat on the sunny balcony with my book. After about thirty minutes I really began to feel the pain in my hands, feet, and knees. It was bad enough that I decided to leave a lot earlier than I planned, hoping that I could get a little more comfortable at home. Maybe it was sitting in one position for too long. I do sit at a desk most of the day at work, but I have to get up quite often and do not normally feel too much pain until I get home and just stop running around for awhile. Whatever the reason, it was rather disappointing to look forward to relaxing at one of my favorite places and ending up being so distracted by pain that I could not enjoy it.

But enough of that, here are pictures of some of the stuff I have been up to recently:

I originally was not going to plant any veggies this year, but in the end I decided to plant some but put them in pots instead of in the ground. I did this because I tend to move plants to see if they grow better in different areas and sometimes just because I change my mind. It's a lot easier to do that when they are in pots instead of digging them up each time.

I also planted a couple of bell pepper plants. The bell peppers usually turn out smaller than ones you get at the store, but when you grow your own without any pesticides, etc, they really do taste so much better.

I also planted a few marigolds around the yard. I love the smell of marigolds and they always remind me of my childhood. My mom planted them every year and my sister and I always pulled the dead flower heads off and spreading the seeds around.

I had to include a picture of our peach tree. This will be the third summer it has produced and they should be really delicious this year.

I put together a new wreath for our front door. I would rather do the work myself for $15.00 then spend $30.00 or more for one that is not well done.

I spent some more time organizing all the stuff that has piled up in our bedroom. I collect a lot of different art and eclectic items, so things can get a little cluttered some times. I have been trying to edit those things and display the others so we can enjoy them.

Tuesday, May 18, 2010

You may have won this one RA ...

Apparently a young woman with Rheumatoid Arthritis, or anyone really, should physically work themselves to the point of exhaustion, which is what I did yesterday moving furniture around my bedroom. I used to bounce back from that kind of stuff pretty fast or least I would only suffer from a few sore muscles. Not any more.

By the time I went to bed, a strange noise would emanate from my throat every time I moved a part of my body. I want to describe it as a groan, but my husband said I sounded like a dying animal. Either way, he had to listen to it every time I tried to turn over in bed.

Today I am aching from my fingertips to the tips of my toes, so getting through work is my only plan.

Oh well, lesson learned.

Monday, May 17, 2010

My nemesis ... clutter

There is no other way to say it; I hate clutter. I am one of those people who may have a lot of stuff on their desk at work, but everything has it's place. I even turn off my computer when I leave the office so that no one is tempted to sit at my desk and touch anything. Yes, I know I can be somewhat anal.

When it comes to our home, I have a lot of artwork, books, and clothes, but I try to keep everything organized and out of the way. Every few months my husband and I clear out things we do not use or do not need and donate it. But when you have a lot of crap, it takes work to keep everything neat. The energy to do that work is not something I have had for quite a while due to my RA and things have begun to just pile up around my bedroom. I honestly hate looking at it, but every time I even think about cleaning up the clutter, I think about the other things that need to be done around the house. I just don't have the energy to do that much and I just have to pick what is most important, which is not putting away laundry.

But last week I tripped over the suitcase I had not unpacked from vacation last month and that was the last straw. I knew that I just had to put in the work and I would feel better when it was done (probably not physically, but at least emotionally and mentally).

I started with my books, which I love, and the four sets of shelves they occupy. I rarely keep books that I have read because I give them to people I think would like them, which means almost all the books were unread. My husband would prefer for me to get rid of all of them, which is what he was hoping would happen after he gave me the Kindle, but there is no way I can do that. I slowly went through them, trying to be honest with myself if I would eventually read it or not. I sold quite a few to Powells and will donate the rest, which left me with two full sets of shelves.

We decided on the entertainment unit pictured below from Ikea that would hopefully keep us more organized.

I was exhausted after lugging the three huge boxes into the house, but then we still had to put the thing together. I love Ikea, but damn. The whole unit is mostly held together by little wooden pegs and every time we would put one piece on, another would fall off. I am also surprised my husband did not threaten to divorce me after the amount of times I told him to put the wrong pieces together. Two hours later, we had the unit together and lay collapsed on the couch. But I could not leave it at that. I ended up organizing the books I had left before I walked away.

I worked on our room a little more tonight, but after yesterday I am pretty stiff and my knees are achy so I took it easy. I still need to go through my wardrobe, hang up the artwork we took down, and sift through some random stuff. I figure if I spend a little time each night, I will have everything pretty much organized by the end of the week. But it is usually all or nothing for me, so if I am going to put in the time, I want everything just right.

On a completely different note, here's a picture of my new haircut. Obviously I really like it because I never ever take pictures of myself. I haven't even taken the time to pluck my eyebrows lately because of the energy it takes so I was really happy to feel pampered.

I also took a picture of my right hand, which is the one I have the most problems with. It actually looks pretty normal in this picture, but if you look at my ring finger you can see the indentation from a ring. I have worn my grandmother's turquoise ring everyday for almost ten years and I honestly did not think about the problems with the inflammation in my hands until the other day when I was twisting the ring. I realized how tight it was and I could not pull it over my knuckle. I was praying that I would not have to have it cut off, which would not only upset me but also my mother. After painfully placing my hand on an ice pack for several minutes and then applying quite a bit of coconut body butter, my husband was able to yank it off. It saddens me to look down at my hand and not see the ring, although it still feels like it is there. Hopefully I will not have problems with my wedding rings because I would really be upset if I could not wear them.

Saturday, May 15, 2010

A much needed reminder...

When my life is running smoothly and I am not in too much pain, it never seems like I have time to sit down and write a post. I guess that I am just trying to use every minute of those days doing things that I can't do on a normal basis. But as soon as I have a bad day, I want to run to the computer and write a new post. I guess it is a way of venting without feeling like I am annoying those I love. I am sure they get tired of hearing what hurts today or how anxious I am.

This week was the perfect example of that. After finishing up two of the three appointments I had this week and getting a fabulous new hair cut, I was feeling pretty good with myself. I finally felt like I could take a deep breath and relax for a while. I thought a post about my day outside in garden and a picture of my hair would be fun, but then I ended up doing other stuff and fell asleep comfortably after a busy day.

The next day I went to physical therapy in the morning knowing that I would not have another appointment to go to for weeks, which makes me incredibly happy. I ran a few errands and was home by the early afternoon, so I decided to take a nap. A call from work woke me up about forty-five minutes later. I don't know if it was the sudden awaking, but I was not feeling right. My heart began beating extremely fast and I felt sick to my stomach. After feeling so relieved earlier in the day, I was having a panic attack (a typical pattern for me). I lay in bed, curled in a ball, holding on to my ice pack (cold always helps calm me) and finally called my husband. Luckily it was pretty late already and he was able to leave work and come home.

We ended up taking a walk later in the evening to work off some of the remaining nervous energy that I had built up, but I could not shake the unsteady feeling. I felt so vulnerable, like I could have another panic attack at any time. I was also feeling sorry for myself having to deal with the rheumatoid arthritis because I tend to have flare ups within a couple of days of a panic attack.

I thought about writing yesterday, but I knew it would just be a pity fest so I avoided my blog. But after reading through my usual list of blogs that I keep up with, I came upon a post by Rheumatoid Arthritis Guy about rewording the negative thoughts that go through his mind during the times of debilitating pain.

All day long, my mind remained calm while my body felt like it was on fire. It’s definitely being tested, though. Just when I felt like I had finally shed some of the unhelpful thoughts that I carried around for so many years, I find that they are once again beginning to reappear.

“This is going to last a lifetime?”

This thought is always good for a few seconds (or minutes) of intense anxiety. When I frame my situation in these terms, it seems so impossible to deal with. So today, I decided to rewrite this thought. I turned it into “Sure, this will last a lifetime – but I only need to get through this moment. I have done so before, and I will continue to do so.”

That last sentence just smacked me in the face. If I had not have been at work, I probably would have burst into tears reading his post. "That's me," I kept saying to myself. Not only because of the understanding of rheumatoid arthritis, but also how I feel when I get extremely anxious. In the midst of a panic attack I think things like will this last forever, can I live like this for the rest of my life, and how is one person supposed to deal with two debilitating problems.

So the next time I have a panic attack or a flare up I will remind myself that the panic/pain will end and I will start again tomorrow. Maybe I will be a little unsteady as I shake off the anxiety, but I have done it before and I can do it again.

Thank you again Rheumatoid Arthritis Guy. You reminded me how important positive thought is, especially during the hardest times.

Wednesday, May 5, 2010

a roller coaster of a week

The week started with a trip to see the rheumatologist for a routine appointment. Correction, I saw the physician's assistant for a routine appointment which I am realizing will be the norm. The good news was that my lab work showed some improvement, so the plaquenil may be starting to work but we have to wait the full six months until we know for sure. The bad news was that over just a couple of months I have put on weight. In some ways it makes sense because I have experienced the worst of the pain during this time period and have been moving less and less. But the weight just makes my situation worse, so it is something I have to work on.

She was also able to answer a few of my questions such as why I have an extreme reaction to any kind of cold including air conditioning. For example, the air conditioning is almost always on when I am at work and after a short time of being in the office, my hands and feet get really cold and begin to tingle, the joints ache, and sometimes my fingertips turn white. Soon after I leave the office, they warm back up but the achiness continues for the rest of the day. It turns out that it does happen to some people with RA and it has something to do with blood vessels constricting. Unfortunately the answer to what I could do about it was just to make myself as comfortable as possible when I am in those situations because there is nothing that can really be done about it besides avoiding the cold. So I will now have fingerless gloves with me at all times.

The sucky part was that the appointment caused me a lot of anxiety, which lingered for the rest of the day. I have noticed that if I experience severe anxiety for a long period of time or get to the point of having a panic attack, I have a flare up not long afterwards.

Between the flare up and the soreness from having seen the physical therapist, I was having a pretty hard time and had to leave work early one day.

Then I fell in love. We were at the farmers market during a charity walk for the local animal shelter when we locked eyes for the first time. The little chihuahua was so freaking adorable and he was up for adoption. Rommel said we would go home and talk about it before I could apply for him. For two days I checked my email just about every hour to see if the rescue had found him a family at the event or if he was still up for adoption. My heart dropped every time I found my inbox empty. I finally received a response and it turns out the adoption is not meant to be, which is probably a good thing. Three dogs could be a lot to handle considering I can't even walk my two dogs with my wrists the way they are. Plus my dogs have horrible manners, so I need to work on that. But I can't promise that I won't open the door to any other animal that needs a home in the future; that's just who I am.

Finally, the weather warmed up and I decided to get back outside to work on our yard. We planted a new bougainvillea where the empty wall was bothering me. I also began pulling up a bunch of growth from this aloe plant which seems to grow like weeds. I guess I got a little carried away because I ended up covered in scratches from the plant that itched like hell. The next day I moved to the backyard and began cleaning things up from the winter. I also planted a variety of tomatoes and filled some pots with marigolds.

After digging in the dirt with my hands three evenings in a row, I am feeling some pain today so I decided to take it easy after work. I had a new book that I wanted to focus on but I did not really feel like sitting still for very long. I ended up taking a walk to go get dinner and am now watching one of my favorite shows, Ghost Hunters.

So there have been a lot of ups and downs this week, but I am trying to focus on all the gardening and stuff I was able to do because it made me feel "normal" for awhile, whatever that really means.

Saturday, May 1, 2010

always known as the sick girl

A couple weeks after moving to California in 2004 I began working as a cashier to get by until I found something more permanent. Over the eight months I was there, I developed a habit of passing out. I ended up applying for a position in the office of the same business and I knew the question of my health would come up. I told them that I would not have any problems because I would be sitting at a desk not standing at a register in the heat of summer. What the doctor diagnosed as vertigo continued, but not to such a serious degree, until my "abnormally large" tonsils were removed. The problem was that the reputation of being "the sick girl" was already in place.

A few years later my husband was diagnosed with diabetes and my stress/anxiety level was continually high. I began having debilitating stomach and intestinal cramps on a daily basis which was diagnosed as Irritable Bowel Syndrome (lovely phrase, isn't it?). The last place I wanted to be during those moments was at work and I began leaving work early, taking longer lunches, or just calling in sick. I will admit that I was completely undependable during that period even though I hate the thought of that. As life became a little easier, my symptoms slowly disappeared.

And once again I am dealing with becoming the undependable person again because of the Rheumatoid Arthritis. I manage to get through most days just dealing with some annoying joint pain and fatigue, but there have been a few where I sat at my desk nearly in tears. This last Saturday was one of those days. From the moment I walked into the office, I debated about leaving early. On top of the fact that every inch of my body was aching and I had a fever, I could not concentrate for the life of me. Everything was taking three times as long to complete and I was making mistakes that I would not normally make. I kept thinking that I might just push through as long as I could or leave at lunch, but I could not get over the thought of walking out on the work I had. I ended up leaving with only ninety minutes left, but took work home with me that needed to be sent to corporate the next day. After a very long nap and some pain medication, I was able to be semi-comfortable in a cushy chair and finished the paperwork which I dropped off at work the next morning.

But I can't help wondering if it's worth it. Is it worth so much physical pain to get through a day of work just because I do not want to disappoint someone? I want to keep working and I know that I need to keep working, not just financially but for my social and emotional health. But at what point do I say enough is enough and I need to do what is right for me, which is usually rest.