Tuesday, February 22, 2011

The Waiting Begins

Yesterday was a long day. I was so worn out after trying to work (my bad), then seeing the doctor...which included lab work and X-rays. So, Dr. S said he thinks I probably have Rheumatoid Arthritis (RA). Although he did say, it could be Reactive Arthritis, which comes on after a virus. Considering how sick I've been since Christmas, that wouldn't surprise me at all. It should take a few days before all of the tests results are back. It's possible that I will be in limbo (not again!) and not get a concrete diagnosis for a while. Although, if the blood work is negative he will probably call it Reactive Arthritis. But, that doesn't mean it isn't RA; you can have seronegative RA just like you can have seronegative MG (oh joy!).

I'm supposed to start taking anti-inflammatory medication. I really do not want to take anything more. But, I don't want to be in pain either. The doctor also prescribed some topical cream. Depending on what the blood work shows, and how I feel, I may need to go on something stronger. Maybe a disease modifying drug. Those are the big guns. Those scare me way more than the anti-inflammatory meds do.

In addition to the pain, stiffness, and swelling, I just plain feel bad. I can't describe it. I sort of feel like I have the flu, only I don't. This newest illness makes me realize (no, it really does this time) that I have to slow down. I need to ask for help. I'm thinking not only about the day-to-day stuff but the big stuff as well. We have two graduations, two graduation parties, and our 25th anniversary this year. I am more than a little concerned about how I will do at all of these events. I will need help with the planning and during the festivities. I'm concerned about Aaron's graduation. It will be at IU's Assembly Hall. I don't know if you've ever seen that place on TV, but it is a disabled person's nightmare. I have checked, and they do have seating available for disabled individuals, but only one person can sit with them. Call me sentimental, but I want to sit with my whole family during this once-in-a-lifetime event. Why should I be denied that right because I am disabled? OK, I know that there probably aren't that many options available. The whole place is a design nightmare, even for healthy individuals. When the date gets closer, I'm sure we can figure something out.

I know I need to respond to some of the comments here. I will get to them. I promise. I just have no energy. It's taken me quite a while to get all of this typed out. And, I still have more I want to say (imagine that). But, it will have to wait. I want everyone to know that I appreciate your prayers and support. They really help!

Have a blessed day!


  1. What can I say! You have had your share and then some for 2011 and beyond... ENOUGH ALREADY!!! I know that's what your saying...And no I'm not going to get on you regarding medicine!!!

    You have quite the social calendar, lots of great things to celebrate, so focus on the positive, sit down and plan it all out, delegate what you can and recruit some volunteers, it will all get done....

  2. You know me Shari - I agree with Rachel, with the exception of delegating what you can, because you can delegate all that needs to be done. You have a house full of adults!! You know better Shari and I don't believe that you are going to slow down. You HAVE to listen to your body. Even when your body isn't saying anything, you know what little it takes to get it screaming!!!

    I hope I am not sounding too harsh. It is just that there is so little you can do to help yourself, I hate to see you intentionally push yourself more than you know you should. I have reached that point at least a year or two ago.

    You have great milestones to celebrate this year. Sit back and enjoy them - as a guest. I have been doing that for the last few years and, believe me, I fought tooth and nail before surrendering. I love to cook and entertain. Leaving everything in others hands just isn't me.

    I do understand the "just one more thing,or let me just do this or that, then I'll go to bed" mindset. It doesn't work, because you will keep going until your body screams "Uncle". You absolutely cannot reach that point.

    No Diet Coke for you missy, until you pull back the reins!!
    Sorry to be so harsh, it's just that I want you to feel the best you possibly can!!

  3. Thanks guys!I know you are both right, I need to delegate more.

    I know you get it Cathy. I don't know; sometimes I think if the kids had already moved out this would be easier. I mean, I'm glad they are here, but I feel like I need to do some for them. I want to. But, I know I do too much.

    Believe it or not, I think part of the problem is I don't really realize how sick I really am. I doubt myself. Still! Especially, with this arthritis stuff. I can feel so terrible and be all swelled up and a few hours later feel nearly normal. ????

    You are not harsh. I know that you both just care. I remember having a similar conversation with my friend Cindy before she died. I told her she needed to slow down. Of course, our situations were different. But, she just couldn't do it. She lived life to the fullest up until the end. In her case, it probably wouldn't have made much difference either way. I guess what I'm trying to say is that I know where you guys are coming from. I will really sit down and try and come up with a plan. I promise. I'll blog all about it later this week. Thanks for the "talking to".

  4. Oh, by the way. Cathy meet Rachel. Rachel meet Cathy. Rachel is from out east too, right? Cathy, I met Rachel on the MG board and Rachel, I met Cathy on the MS board. lol Thank goodness for the forums.