The snow ball effect
So two nights ago I had a bit of insomnia. It has been worse, but I was awake for the crucial 2-4am hours, so when I woke up, I felt like I was run over by a truck. Most of the day consisted of me yawning and wishing I could sleep. It was not cool.
That evening I decided that instead of walking home, which I have been trying to do as often as possible as part of my push to be as healthy as possible, I would take the bus.
My feet were hurting and I was pretty much exhausted. Once I got on the bus there weren’t many seats left, so I took one of the the front seats. I always try to go farther back if possible, but often those seats are full. I made sure to sit in the middle seat, next to this older lady, in order to leave space in case there was someone who really needed an immediate seat. A few minutes later a girl in her early twenties sat next to me.
The bus took off, but there is a light where the buses pick up passengers and someone banged on the door to get it. I wasn’t paying much attention, hoping to zone out for the rest of the trip home.
Well apparently, one of the people who got on the bus was another older lady. After a few moments, someone got up and let her sit down. The lady sitting next to me then turned to me and the girl sitting next to me and said “You girls are supposed to get up for her.” Now, I really had no tolerance for any scoldings at that point. The girl next to me said “I’m sorry, I didn’t see her.” I turned to the woman, looked her straight in the face and said “I have hip replacements.” The lady kind of paused and then mumbled a quick “sorry.” I turned back in my seat and didn’t look at her for the rest of the trip.
When I got home, apparently my overwhelmed emotional state got to me and I had a good cry about it all. Then I was pissed that I let someone get to me like that. I’m sure that most people deserve the scolding. I know people are reluctant to give up their seats. I also know that no one would give up their seats for me no matter how bad I felt because I look healthy. And I know the woman who got on the bus needed the seat more than I did, but it was obvious that she could use a seat and I assumed someone would give her a seat, which they did. I really resent the fact that I am made to feel like I’m supposed to gauge whether I deserve a seat more than someone else. This is why walking is better, even if it is difficult.
Anyway, there is no reason to keep feeling angry about it all. It isn’t really that lady’s fault. It just pushed on the button of why this disease can be a really difficult one, because to most people it is invisible. If you look hard enough, you can see. But how often do any of us do that?
And it capped off a pretty crappy day.
Ultimately, she could have been much more rude about it and not apologized, so I guess I should figure it went pretty well.
Honestly, I was a bit surprised by my actions. I would have thought that I would have just ignored her. But I was going to be damned to let her just judge me without having a clue about me. Although then I was mad that I had to justify myself to a total stranger. See where this is heading? This is why I try not to get angry at stupid stuff like this. It just snowballs. But I had no resistance to it yesterday. I was just spent.
Thankfully, I got a good night rest last night. And it’s Friday, so today has to be better, right?
Filed under: Whining and Complaining | Leave a Comment
Tags: chronic illness, exhaustion, pain, rheumatoid arthritis
The Relationship Rollercoaster
My husband and I have been married for eight years. And it seems that in that time we’ve both grown and learned a few things about how to work out arguments and manage our relationship. But no matter how long we are together, there are still some things that are a struggle.
One thing, of course, is my RA.
This weekend we had many discussions about his attitude about my RA. It started after he made an off-hand comment that bothered me. I suggested that we go to the local bakery to grab some coffee and breakfast once I was up and moving for the day. A few minutes later, he was ready to go. I told him that I was still sore and I wasn’t ready to go yet. His response was “of course you’re not.” I told him that statements like that make me feel like I’m not doing enough to manage my arthritis, like I have control over what my body is doing at the moment. He said he was sorry and validated my feelings. Later, he talked about wanting to get another puppy. We have a wonderful miniature schnauzer that is 4 years old. She is completely house broken and well trained. At this point, because we live in a third floor apartment, my husband does most of the dog walking duties. I, on occasion, fill in when he is busy. But, since I agreed to live in this apartment, which was necessary because we moved to a big city so that he could attend graduate school, he agreed to take on more of that job. He also takes care of the laundry for the same reason, but I digress. I told him that getting a puppy is not feasible because of the fact that it would be very hard for me to help house break it because of the stairs and also because we are not planning to stay in this apartment after our lease is up next June. Having two dogs would make finding a new place all the more difficult. To that he said “I know, we can’t because of your arthritis.” Again, it was just as much his tone as his words that left me feeling upset and frustrated. Again, he heard my concerns and apologized. He agreed that he knew I couldn’t control it, but still he continues to make these kind of comments. He often agrees to take on more work in the house hold that he knows is difficult for me, but sometimes seems to resent it.
I find it so entirely frustrating because I make sacrifices or changes in what I want based on what he wants or needs all the time. Isn’t that just part and parcel of a relationship? But because my limitations have the label of RA and often have a daily impact on our lives, it is more of an issue. He has admitted that he sometimes feels angry that I am sick. He does not say he is angry at me, but it is hard not to take it that way.
So what do you do if your partner seems like he can’t get past it? I don’t know if that is really the case for him. He has grown more understanding over time and less reactionary to my limitations. And he now is very apologetic when he makes comments like this. But, the attitude toward my illness is obviously still there. And as I’ve said before, eventhough I get frustrated by these reactions, I also completely understand his feelings. At times I am very angry at how limiting RA can be. So how can I blame him if he is frustrated? How can I expect him to fully accept my disease when I struggle with that myself?
It can create such a huge emotional mess to deal with a chronic illness, for yourself and your family. People are often very focused on the day to day physical pain of RA, which is understandable. But the emotional pain can really take its toll as well.
Filed under: Self-reflection, Whining and Complaining | 2 Comments
Tags: chronic illness, emotional stress, relationships, rheumatoid arthritis
The family connection
My grandmother just turned 75 years old a few weeks ago. She has been pretty healthy, but recently her hands have started swelling. She even got to the point where she didn’t reply to my emails because her hands hurt so bad.
When I found this out, I immediately told my mother to get her an appointment with a Rheumatologist. Apparently her doctor had told her that she had gout, although she had a strange reaction to the meds.
I grew up in a very small town that did not have a Rheumatologist. The nearest ones, of which there were two, was 90 miles away. Two weeks ago, my grandmother went to my very first Rheumatologist and lo and behold, she was diagnosed with RA. They’ve put her on the exact same medications I started on and she is doing much better.
When I told one of my friends they said, “oh I’m sorry.” I would think something like this would hit me hard, but it didn’t. I mean, I knew that RA was on my mother’s side of the family. It never occurred to me that it was on my father’s side as well, but it makes sense.
And considering my grandmother’s age, I think she’ll do okay. They caught it early and she will be on the medications she needs to live comfortably. It appears it is a less severe case than mine, which seems typical when diagnosed much later in life.
But it is strange to suddenly go from being the only one in your immediately family with this disease to sharing the burden. At least she’ll have me to walk her through it, that was something I never had and would have appreciated.
Filed under: Update | Leave a Comment
Tags: chronic illness, doctors, relationships, rheumatoid arthritis
2009 Arthritis Walk
I just signed up to be a team captain for the 2009 Arthritis Walk in Boston!
I already have some friends and family who are going to be part of my team. I’ve never done this before so I’m pretty excited.
Here’s our team website if you want to check it out: Team Awesome
I’m looking forward to having some fun, raising some funds and writing a bit about my experience. Thankfully I have a few months to prepare. The walk is on September 13th.
Filed under: Update | Leave a Comment
Tags: Arthritis Walk, chronic illness, exercise, rheumatoid arthritis
More doctors fun
Went to my Rheumatologist on Thursday. The appointment went pretty well. My hands are still a bit swollen, but it was obvious the increase in Methotrexate helped. She told me I could increase it some more, but I decided to wait because the weather has been so rainy here that I think it has made my RA a bit worse the last week. She was very happy with my vitamins and exercise schedule. I think I’m finally getting into a groove with her, which is good.
I talked with her about the fact that the FDA may ban vicodin because if its use of narcotics with acetaminophen. She seemed satisfied with my use of it, but said she thought it would be completely taken off the market before I see her again. She wrote me a script for hydrocodone, which is apparently the same med, without the tylenol. But when I went to get the script filled they said that she didn’t put some kind of number on it for controlled substances.
I’ve never had issues with this before, so I’m assuming it was because of the change in prescription. So…since it was a holiday weekend I wasn’t able to get it filled. It was upsetting because I was thinking about walking around for the 4th, but I ended up going to a relaxing pool party instead. Honestly, I think I just got upset because it was just another glitch that I habitually run into when dealing with the medical field. And most of the time these issues have some sort of negative impact on my functioning. I just don’t like being limited. I am already pretty limited in my life and I like knowing I have the meds I need to do what I want to do. The point of the story is, that if you are on any meds like I am and will need to switch if the FDA does approve a ban, make sure your doctors appropriately fill out your prescriptions or get them filled during business hours. It will save you some aggravation.
As I mentioned, on the 4th of July I went to a fun pool party. However, I did not swim because the water was freezing and there wasn’t any railing to get in and out of the pool. I know my friends would have helped me, and I probably would have let them if I wanted to go swimming bad enough. One of my friends tried to get me to go sit with my legs in the pool because she didn’t want me to sit by myself. I explained that getting down on the ground is hard for me and that trying to do that on the edge of the pool would be very difficult. She was understanding and told me to let her know if I needed company.
This whole situation started me thinking about how my RA has created this habit where I negotiate with myself how much I want something. I often assess if I want to do something enough to bother others or feel embarrassed. I’m constantly evaluating a cost/benefit ratio in my head. Is the enjoyment I’m going to get from something worth the effort to get there? Sometimes it is, sometimes it isn’t.
The people who are close to me are pretty good about being understanding once I explain the particular issues about the situation, but they don’t usually think of it. Well, except my husband. My husband often assumes I can’t do things that I think I can. But that is another issue for another time.
I know that my anxiety has increased as my disease has worsened, which makes sense on many levels. But I think I tend to ruminate on things and the fact that I feel like I need to think through any possible scenario impacted by my RA has created or at the very least, reinforced this habit.
I wish I could do things without thinking, like my friends seem to do. And realistically, there may be some things that I could let go and let myself do. But finding that happy medium can be very difficult at times.
I guess I’ll let you know if I ever figure it out!
Filed under: Self-reflection, Update, Whining and Complaining | 2 Comments
Tags: chronic illness, doctors, medications, red tape, relationships, rheumatoid arthritis
What can you say?
The other day I had lunch with a few co-workers. We were talking about vacations and told them that I had gone to Europe a few years ago and that I can’t imagine doing a trip like that again because it was so tiring (but yes, it was incredible).
One of women, who is about my age, responded “What are you ninety?”
I laughed and said “Sometimes I feel like it,” and left it at that.
After lunch I thought back on that moment and wondered if I should have said something different. I’m often very guarded about my disease. I feel awkward telling people about it and having to explain it. I worried that if I had said something the person would have felt embarrassed and bad about their joke. But not saying anything, I wondered if they think I’m just a big complainer. Part of me thinks “I shouldn’t have to tell anyone unless I want to” but then the other part of me says “well this is part of who you are and you should let down your guard.”
I struggle with this issue day in and day out. I think it may be part of the reason why I don’t like to change employment or move, although there is a laundry list of reasons for that. But one is having trouble feeling comfortable with sharing that part of myself with others.
Sometimes I wonder if it would be different if I had a disease that people recognized as something “normal” for my age. I honestly don’t know. Maybe this is something that people struggle with no matter what their situation, it just is different issues for different people.
Filed under: Self-reflection | 6 Comments
Tags: chronic illness, relationships, rheumatoid arthritis
Feeling fine
So I can tell that my energy is up lately. My Rheumatologist has been pushing me to keep up with my strength training so I have been doing my best. I can already tell that I’m feeling stronger, which is great.
Although some things still tire me out. Going to the grocery store requires rest afterwards, especially if I have to carry these groceries up our three flights of stairs. But I’m noticing that I am rebounding faster, which is nice.
I’ve been walking at least 6 miles a week. I’m trying to do more, but I can consistently fit in two miles three times a week. I just need to remember to be patient and don’t over do it.
Filed under: Update | Leave a Comment
Tags: chronic illness, exercise, exhaustion, rheumatoid arthritis
More appointments
I had a follow up appointment with my Rheumatologist. She said that overall I’m doing well, but I seem to have some ups and downs. She recommends that I go up on my methotrexate. I talked to her about my concerns. I said that my husband and I are planning on trying to conceive in about a year and wasn’t sure if it was a good idea to go up on my meds. She told me that I needed to be off the methotrexate for three months and that it is probably better for me to have my disease completely under control first. I think she is right, so we are going to go ahead with upping the dosage.
She showed me my x-rays and talked about how important it is for me to wear my orthotics. She said that my right foot is worse than my left. She seemed supportive of me using my meds to go to the museum or out for the day at the marathon. So I think we are on a better path now.
Let’s hope so.
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Tags: chronic illness, doctors, medications, rheumatoid arthritis
Good news, sort of
So I went to the podiatrist yesterday. He told me that the node on my foot, was not a node from my arthritis but a bursitis that developed to protect the edge of my foot. He said that when I changed my shoes, I did the best thing I could have done for it. And that is why it has gone down significantly. He told me to do some calf stretches – apparently having flat feet can cause your Achilles tendon to tighten – and keep using the footwear I’m using and my orthotics.
He checked my X-rays since my Rheumatologist had question the pain I had reported having after use. He said that I do have damage to my feet, but unless it is so severe that I am having trouble walking there is nothing to be done surgically. This is something I knew before, but it was good to hear him say I was doing what I needed to and that my pain wasn’t in my head. I feel very vindicated after having an argument with my new Rheumatologist about having pain in my feet – since she said I shouldn’t because she didn’t see any active inflammation. The podiatrist also commented that my joints are still loose and that is a good thing. So overall, he gave me the best news I could expect. Now we’ll see how my Rheumatologist reacts to it next week.
We’ll also see how my vitamin D level is. I continue to feel very fatigued and wonder if the supplement was helping. I’m anxious to know how my blood work turned out.
I spoke with my husband about my podiatry appointment and it just seemed to make him anxious. Any talk of surgeries gets him worried. I tried to tell him last night that anything the doctors see now is from past disease and that I’m doing very well. I just get frustrated because it is hard enough to deal with my own feelings about this and sometimes I resent feeling as though I need to protect him from it too. I know that isn’t fair, but it is often how I feel. If I’m dealing with it and feel okay about it -why does he feel burdened by it? We talked about this a little and he said basically that he feels what he feels, which I can’t argue with. It is just frustrating. Aren’t I the one who is sick? Shouldnt’ I be the one who needs to be taken care of? But that is the thing with chronic illness. It doesn’t just impact the person with the disease. It is something everyone in the family has to face and manage. I need to be able to step back and remember that. After all, his emotions come from being scared for me because he loves me. And for that, I should be grateful.
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Tags: chronic illness, doctors, exhaustion, relationships, rheumatoid arthritis
Rebounding, finally
So things got progressively worse, in terms of my cold, after my last post. Lately, it seems like I’m getting sick every three-four months. Ugh.
But my chest seems clear now, although I occasionally have some congestion that I think is allergy related. *shakes head*
The east coast got a heat wave this weekend and I was really uncomfortable. I don’t like to be cold, but being hot seems to make me swell and I get achy.
Does anyone else have this problem?
Filed under: Whining and Complaining | 14 Comments
Tags: chronic illness, colds, rheumatoid arthritis, soreness, weather
Bionic Lady 