Lots of changes

05Aug10

Well this summer has been one of transition. My husband graduated from graduate school, we moved, he recently started a new job and…oh, I got pregnant. The reality of it all hasn’t quite set in. I haven’t posted for a while because it has been a rough couple of weeks and I didn’t want to complain about something that I have been wanting so badly. But the fact is, pregnancy is hard work.

We were only trying for a few months so it was a bit of a surprise.  I had been off Methotrexate for about 6 months before and my RA was level, but I still had days when it was bothering me. So I decided to use the Fertility Awareness Method described in the book “Taking Charge of your Fertility”  by Toni Weschler to try to get pregnant as soon as possible. And it worked! It does take some time to learn.  It took me about 6 months to get the hang of it, but I highly recommend using it if you want to get pregnant at certain times. I had many friends who were in their third trimester during the summer and said it was very uncomfortable. I knew with my disease changes that I might already be uncomfortable, so I hoped to avoid that. Unfortunately, the summer heat also intensifies the nausea I am feeling, but I think having the baby in the winter will be much better in the long run.

So yeah, I’ve had A LOT of nausea. I’m at 10 weeks now, which is supposedly the peak of that. I’m hoping that I’m not one of those lucky ladies who have “morning” sickness for all nine months. Cross your fingers!

My RA has been more active. I was doing okay during my first month, but that is because I was taking Enbrel until I had a positive pregnancy test. This was under my Rheumatologist’s advisement. I actually had multiple RA docs say that this is acceptable. My Rheumatologist also told me that I can take Tylenol for pain and that I could either take Prednisone for the inflammation or get Cortisone shots if a particular joint is bothering me. My right knee is a bit more bothersome so I’m considering the shot. I am holding off using Prednisone unless I absolutely have to. I’ve been on it in the past and I didn’t like it. I was resistant to taking Tylenol at first, but now am taking it fairly regularly and that helps a lot. I’m not sure why I was hesitant since the doctor told me it was okay. Paranoia, I suppose.

People keep telling me that women often go intro remission during their third or fourth month. I’m hoping I’m one of those lucky ones, but you never know. So for now, it is taking it day by day and doing the best to take care of myself.

I had many friends who talked about the symptoms of pregnancy, but I never realized how all encompassing it was. It rivals RA as a life swallower. Dealing with both right now is pretty exhausting, but I know it will be worth it. It is just difficult to think that way when I don’t really feel pregnant yet. I’m sure things will change greatly in the next few months.


Apparently my current posting frequency is once a month. I have been so busy with my work life and my home life that the blog has fallen by the wayside.

My husband and I are now officially trying to get pregnant. Nothing has happened as of yet, but at least we’ve crossed the threshold of trying to figure out if it is the right time. And it is about time, because my joints are starting to act up off the Methotrexate.  This morning was pretty awful. I could barely move. I had to rest instead of biking. Lately, I find that I am doing much better at allowing myself to rest if I need it and getting back on track to being active once I feel better. I’m actually starting to equate feeling good with being active. It is nice to see not only my physical progress, but my psychological progress as well. If only I could figure out a way to not worry about things all the time.

The newest topic of worry is how I will deal with my physical concerns while pregnant. I have many, many pregnant women in my life right now and they all complain about aches and pains and being generally uncomfortable. Considering the fact that this could describe me on an average day, I’m scared about how this is going to be for me. I know that I am a strong person and I can tolerate a lot more discomfort than many people I know, so maybe it won’t be as bad as I expect.

But again, I’m putting the cart before the horse. I should worry about it when it happens, not while I’m hoping it will happen. As my primary care doctor said to me, “now it is just the waiting.” We’re doing the things we need to do to increase our chances and we’ll have to see where it goes from there.


So I guess I haven’t written much because there hasn’t been much to tell. I’ve been really focused on being active and getting healthy. I’ve been losing weight and feeling good. My RA doc says that I’m doing well off the Methotrexate and that hubby and I can start trying to get pregnant whenever we decide the time is right. We’ll be moving in a few months and so I think we’ll be waiting a little while longer until things calm down, but so far so good. My RA doc wants me to go see an Orthopedic surgeon to do a check up on the hips and to find out of they recommend a high risk OBGYN. I had always assumed that I would have to have one, but she said that since my old surgeon had said I should be okay for child-birth that it may not be necessary. That would give us more flexibility in the process, so I’m cool with that.

So in the meantime, I’m just really focused on being as strong and healthy as possible. I can’t believe how good it feels to be able to actually feel my body gain strength. It is so great. I have been at this point a few times in my life where I’ve really focused on exercise and strength training and it is hard to understand why I let myself fall out of these routines. I just feel so much better when my physical health is my focus and I find that the more I am doing it, the more I want to. So overall, things are fairly good.

Now I just  need to keep myself on track…


…especially to write about my RA.

I haven’t been writing to process my feelings because my husband and I have been addressing my RA as an issue in therapy.

My RA can be a huge difficulty for us and it is one that we have yet to work through because it is always there. It isn’t a phase that we can pass through. It is part of who I am.

Right now, we are working on being more empathetic to one another. It has made me realize how I empathize with him in theory, but often feel resentful because the script in my mind is that “his experience can’t be as awful as mine.” This thought process is so unfair and leads to the both of us trying to feel validated and never validating the other person.

It just makes me realize that living with my RA can create a bubble for me. A bubble that makes it very hard to see other people’s perspectives. It is always about how I feel, how other people impact me, and how much harder my life is than everyone else.

It creates a jealousy that is starting to turn my stomach. Yes, my life can be difficult, but I’m the one who decides what to do with that. I do have a choice and lately the choice has been to mope and feel sorry for myself.

I have to figure out a way to turn it around. I’m not saying I should pretend it isn’t hard. But I need to honor the struggle, while appreciating what I have.

I have a long road ahead of me.


So I bought my husband a Wii for Christmas and my family got me the personal trainer Wii Active to go with it. After using it for a while, I couldn’t help think of the many benefits and difficulties with this program due to my RA.

Benefits:

  • This is an opportunity to work out at home, which is something that I always feel is helpful with my RA. I’m not always on a gym schedule and it is really convenient for me to work out when I have enough energy.
  • It comes with a thera-band. These bands work with resistance to help build muscle strength. This is really great when you have weak or damaged wrists, like I do. It also has many exercises that focus on shoulder strength, which my RA doc has emphasized with me because we don’t get a lot of work on those muscles during our day-to-day activity.
  • If an exercise requires a movement that is difficult, you can easily skip it and find something else to do. There are a lot of jumping exercises that I find uncomfortable, if not impossible. Fortunately, there is enough variety of activities that it isn’t a huge issue.
  • The program allows you to set attainable goals, record your progress and even uses games to keep it interesting. Ultimately, I have found it fun to work out.

Difficulties:

  • Although some of the jossling cardio exercises are easy to skip, it can often shorten your work out to do so. I often need to supplement my workout with a customized one to get a full workout.
  • There are no stretches or stomach exercises included in these workouts. You have to do these on your own if you want them as part of your routine. However, they have recently come out with a follow-up game that includes these exercises as well.
  • In general, the Wii remote helps give advice on form when doing exercises. However, I sometimes have trouble with it saying that my form is off or reading my motions. I think this is due to the fact that I have deformities in my wrist and there is no way for the program to take that into consideration.

Overall I would give this program a B in terms of being arthritis-friendly. Right now it is a new toy and has motivated  me to be active, which is ultimately the most important thing.


Another year…

03Jan10

I hope everyone had a nice holiday. I was able to go visit my family in Maine. It was a nice trip, although travel can be exhausting.

Things have been going well so far. I have been staying active and trying to get plenty of rest. I’ve started going off my methotrexate to get ready to try to get pregnant. I haven’t quite decided when we’ll try because I’m still pretty nervous about how I’m going to handle it. But, my doctor said I need to be off it for three months before so might as well start now.

I still have a few more days of my vacation, which I’m pretty excited about. I will be going to see my RA doc and get my H1N1 vaccine. Whoo hoo! But seriously, I’m glad that I was finally able to get it since I work with college students and germs abound.  I’ve already had my seasonal flu shot and am now going on my third month without getting sick. Knock on wood.  Here’s hoping that keeps up!


I can’t believe it has been so long since I posted.

Unfortunately, I had some sort of virus and that put me out of commission for a while. I had a fever and had to hold my meds. This meant that my RA flared and then I was in bed because of that instead of my illness. Those times are so hard, and this one seemed to last forever.

Fortunately, I am now on the mend. I’m getting back to my work out routine and feeling better.

I’m hoping that there will be a little longer span between sickness this time. It is seeming like I get sick every three or four months. I’ve stopped taking public transit and hope that will help. Our car died and we had to get a new one. Our budget can’t afford passes and car payments, so we chose the latter.

I was also hoping that driving might reserve more energy to work out in the evenings. So far this has not been successful. My commute is close to an hour and I feel just as tired as when I rode the commuter rail/train/bus and I get home about 20 minutes later. I do leave 2o minutes later in the morning, which is a benefit since that seems to be the one consistent time that I have energy to bike. So I’ve extended my morning biking sessions to 30 minutes. I hope once I get myself into a routine I’ll be able to make that 40. We’ll see.

So that’s me. I’m on the upswing of my cycle. Hope you all are doing well!


Well I just got back from a two day trip to New York City. I decided to go to the taping of the Daily Show after encouragement from friends. The results were…mixed. I asked the show if I could be accommodated, due to my difficulty with standing. They told me to ask for a chair when we arrived. However, the doors were not open at that time so I sat on the ground, along with many other people. Once the people from the show came out, about an hour later, I decided to just continue to sit on the ground since we were supposed to be let in shortly. Well, apparently since the Secretary of Homeland Security was the guest, the wait outside was longer than what I was told to expect by friends who had attended the show before.  So by the time I realized how long it would be, the line started moving. Anyway, I should have gotten a chair once I saw someone, but since that was my first time going through the whole experience, I thought the length of the wait was pretty much over.  I was uncomfortable for a while, but not in the same amount of pain I am usually in. This may be because I am in better shape than in past times like these. Considering I spent a lot of time on my feet the day before, it turned out fine. The show itself was okay, but I’m not sure it was worth the amount of wait time involved.

Despite that, I am really glad I took the trip. It showed me I can still do things like this. And we went to an incredibly fun musical, Rock of Ages, the night before.  I took the day off today to recuperate, which I’m also glad I did. I am still pretty sore today and we got back late last night so I was also extremely tired. I don’t think I could do anything like this without a ton of rest afterward.

I could really use a slow week now, but I have a friend visiting this weekend. The next weekend I’m traveling out of state to see my family. Sometimes I wish I knew how to say no. I don’t want to limit myself too much, but at the same time I want to be realistic about how going all the time impacts me.

Again, balance. Always a theme here.


Just had my quarterly appointment with my Rheumatologist. This is my fourth or fifth appointment with her and although I feel much more comfortable with her, I’m just not satisfied.

My last Rheumatologist (and her nurse) could actually remember what we last spoke about, knew my history and had an actual relationship with me. Now maybe that is too much to expect after only seeing someone for a year. I know that they have a lot of patients so it is not easy to remember each of them.

But this week they were going to electronic records and it didn’t even seem like my most recent visit info was available to them. We talked about the same things we always talk about, I had to answer the same questions and my plan until my next visit was exactly the same. It was just irritating. I shouldn’t have to explain every visit that although my RA is minimally active, I have joint damage. Especially after having X-rays that she has already looked at! It was so frustrating. Maybe my last doctor was just amazing and I was spoiled.

Also, in the middle of the first part of my appointment I met a new physicians assistant who remarked that a person at age 25 is too young to get hip replacements (has he worked with RA patients for very long?) and then when he was having trouble figuring out how to put that in the system asked a tech guy to come in and disclosed my medical history to him. Now, I don’t really care about this, but it felt intrusive and it would have been nice if someone had warned me that he needed to disclose this, while I was sitting in the room, to get help. Also, because of this switch over, I had to wait for the doctor about an hour after I was brought in to the examining room. Needless to say, I was a bit cranky by the time I left the appointment.

*sigh*

On the plus side, my doctor said that my exercise routine sounds great and I found out I lost 5 lbs since my last visit. So at least there was that.


So I’ve been meaning to post for a while, but for some reason I haven’t wanted to blog. Work has been exceptionally busy. I work in a college and the students are back, so there has been lots of chaos. Things are always more exciting when students are here.

Our walk went really well. There were tons of people there, my friends and their children had fun and the day was beautiful. Our team just met our goal of raising $1000.  Overall I would count it as a major success.

I’ve started a new work out routine that is going fairly well. During the week I have been trying to bike for 20-30 minutes in the morning. I’m hoping that at some point I will be able to sustain biking in the morning and in the evening, in addition to my strength training three days a week.

Right now, I would say I’m strength training an average of two days a week and biking most mornings and some evenings. I think that is fairly good results, but I have had some pain at times that has required rest and others times I can no longer fight the exhaustion and needed a break. I know that I am more physically fit than I was last year at this time. I no longer feel tired and short of breath from my walk to and from public transit when I commute. Ultimately, I think I’m doing fairly well, but I wish I could be stronger.

My arthritis is fairly quiet with some morning stiffness, although I seem to have one day a week where I have one major joint that bothers me. I’ve mentioned having some hip pain recently to my husband. It isn’t chronic. It has happened twice in the last four months. But he told me the other day that any mention of hip pain worries him. I know that I have my own trauma response when I’m feeling pain, but I don’t always think of his reaction. I’m glad he can communicate that to me now. In the past he may have just withdrew or gotten frustrated at something else. I think this shows that our communication is getting better and we are healing. It is a day by day process. We both continue to try to adapt to a constantly changing disease.

So things are going fairly well, but I’m hoping I can increase my status from fair to good.




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