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It's been a tough week. On Friday we drove to North Alabama to see a football game and stay overnight w/ family. The game turned out to be fun. I did have one weak spell but it eventually passed.

We got to bed after 12:00 which is late for us. It took me quite a while to get to sleep. I then woke about 2:00 and went to the bathroom. After that I couldn't get back to sleep. I got up and read. I did doze off around 5:00 and woke again at about 7:00. I then read some more and drank instant coffee until someone else got up.

I was a little off all morning. We eventually all went out to lunch. That was nice. After that the two of us started home with a stop at the Ave Maria Grotto at St Bernard's Abby. I have never seen it and am glad I finally got to. It's amazing. It was an easy, pleasant walk in a wooded area.

After that we headed home. By the time I got home, I was feeling buzzed and grumpy. After a while I started with the all over pains and achiness and a headache. Of course I had trouble getting to sleep so I took something.

The next day I wasn't doing as well as I had been before the trip. I am tired, don't feel well and can't get going. I'm also getting a little depressed. This is when I received the letter to inform me that my claim for Long Term Disability Insurance had been denied largely because my doctor did not respond to 3 voice messages. Since then I've been worse. I am trying very hard not to let this keep me down but it's taking all I can do. I'm at the point that I'm tired of fighting it and just want to curl up in bed and be miserable. I'll keep going and doing as much as I can but it's awfully hard. I am fortunate that I have family that will never let me get too deep into a Pity Party.

It's particularly hard to have to deal with the main thing that's causing this depression & malaise (other than the obvious illness). I have been working on an appeal letter and today will have to call the doctor's office and deal with the enormous hassle of trying to get what I need from them. I love my doctor but dealing with her office is a major stress.

I'm having some pain in my chest/ribs/lungs????. It just feels achy. Maybe a bit of pleuracy(?). I'm also trying to get my medications but apparently the prescriptions I sent to the pharmacy haven't gotten to them. (It appears they may have changed the address w/o letting me know.)

Lupus is hard work.

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Yesterday I started working some on our office (where it goes if it has no place to go) I didn't do anything too physical. I mostly sat on the floor in the closet and worked on cleaning out our filing cabinet and refiling everything. I also brought a small plastic chest of drawers to put on the filing cabinet for all office supplies. So now I guess sitting on the floor so long wasn't a good idea (who knew?). My left ? hurts. It's somewhere around where my pelvis & hip join. It feels swollen and bruised and I limp and can't put any weight on it when I sit.
Other than that I did pretty well yesterday and feel okay this morning. I woke at 6:30 and didn't feel sleepy, which is very unusual. I often wake fairly early but I'm usually stiff, tired & sleepy.
I'm not sure what I'm going to work on today but I'll have to conserve my strength. We're driving to Athens tomorrow to watch my husband's neice in the flag corp. It may rain in which case we'll just go spend the night with his brother & see her on Saturday for her birthday. I'm not going to sit out in the cold rain. That would be insane!
Not sure if my daughter will be coming over for yoga or walking this morning or if she's working at the school. I don't know if excercise would hurt or help my hip. We'll see.
I just realized that one thing people don't know about lupus is how much I have to try to diagnose myself and plan for everything I do. Everything I do requires planning. Will it be good for me or bad for me? Do I need sunblock, a hat, long sleeves? Will it be too much for me so that I can't do something else I need to do? When I worked, there were less questions. I worked, came home, took medication and collapsed on the couch. On the weekends I spent most of my time on the couch recovering from the week (except those times when I didn't recover and had to continue the weekend into the week.). I couldn't plan anything on weeknights and had to be very careful about anything on the weekend. If I had a birthday party for one of the kids, I couldn't do anything else but save energy for that. If I had two things to do on a weekend, I was wiped out.
Even now, times when I feel good I have to keep in mind that I can't overdue. I have to make myself stop and rest. I try to Tivo programs that I might want to watch when I force myself to lie still. Being still isn't easy for me so I need distraction. I love to read but I'm afraid that would put me to sleep. When I don't feel well, holding a book for any length of time gets too uncomfortable.
Lupus is so complicated.

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Yesterday I did pretty well. I started feeling very tired & a little achy Sunday night and I didn't feel as good yesterday as I did before but still not bad. I washed the living room & kitchen windows and by the time I finished my shoulders were hurting (in the joints) so I quit. I did a couple of loads of laundry and that was about it. My stamina & general condition is still better than before the last treatment. I'm anxious to see how long it will last. I am trying to pace myself better now so I can do more. A little work, a little rest.

Hiking : > )

I'm beginning to think I was right about this time of month after the IGG. I actually went hiking yesterday. We went to Ruffner Mtn, the largest city park in the country. My hips hurt and my stamina wasn't great but I was able to do it. Going uphill I had to go very slowly and stop a lot to rest but I did that. My breathing was good, not labored. I think we went about 2.5 miles. Pretty good for me these days. I'm feeling pretty good today except for my knee. I tripped over a vine on the way out of the woods. I managed to get out of that only to discover that my other foot had caught on another vine. I couldn't get out of that one so I spilled onto the pavement. I did have the presence of mind, however to roll as I fell. I'm very proud of myself for doing that and honestly I think it kept the fall from being worse than it was. As it is, the only problem is where my knee hit I have a very sore knot (Funny thing, it's not bruised looking. Go figure. The Leopard Lady didn't get another spot, unless you count red ones.) and the inside of my hand is very bruised.
I don't know how long this spell of energy will last. I think last time it was about a week & a half or so. If this is true, I can do a lot I didn't think I could do. I just have to time it for 2 weeks after my treatment. Also, if I can get some good exercise during those times, it should help build me up to make it better through the rest of the month. Hmmm.

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Well today started well. If I am remembering correctly, The week or so following getting over the IGG I do pretty well. I'm trying to keep track of it.

I walked one mile this am. It took me 18 minutes to do it but at least I did it. I went to Walmart and spent too much money. I was going to drive through the carwash but it was closed. So I decided to wash it myself before getting Russ for lunch. I was so overdone when I finished! I dragged some clothes on and went to get Russ, with a quick stop at Sonic for a drink and to put a little make-up on.

After I picked him up, Russ & I went to the Paw Paw Patch to eat. It was pretty good and we had a very nice visit.

So, I came home to rest and decided to wash the car windows first. Sometimes, I think I have a problem with being still. If I keep it up, I won't have a choice. Not feeling so good. Achey, hot & tired.

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I went to see the eye doctor and my rhuematologist yesterday. I was feeling good but a bit tired.

The eye doctor is my cardiologist's nurse's husband. He works at Walmart. I like him but I'm not so sure about Walmart. He said that he could see the catarac in my right eye and the start of one in the left. They're still not bad enough to operate. He also told me that the catarac in my right eye could explain why I can keep my eye still in the field of vision test. I'm very glad to have an explanation.

At Dr A-S I got my flu shot and she gave me a review of systems for my Disability records. Wow! I'm sick!
I went to sleep pretty early. I think the shot made me a little sick. I woke at about 2:00 this am and was up for a while. I finally slept but only lightly. I feel pretty good today. Just having a hard time making myself keep moving. Too many idle days, I guess.

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Got up and actually did yoga (as much as I could). I managed to do the dishes, make the bed and load my med boxes. Other than that I was on the couch all day watching Monk & Frazier. I took a nap this afternoon and woke tireder than ever and with a headache so I suggested that (again) Russ should get himself something for dinner. My stomach still feels backed up. I have to go to the eye doctor and Dr A-S tomorrow. I hope I am better or I don't know how I'll make it. I hate days like this. They're so long.

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So, my stomach hurts. Why? Because I overate. Why would I do that? Because I had to have a steroid (Decadron, also had Aloxi) so I wouldn't be very sick today after my IGG treatment on Thursday. Now mind you, I'm happy that I've not had a shrieking headache and violent nausea. Those are my alternatives to overeating, a little aching, constipation & weakness. I'll take the latter. That doesn't mean that I have to like what is going on. Alright, I guess I should spend a little more time being grateful.
I am having a big problem explaining why it is that I can't work. I know that I couldn't hold down a job now but it's hard to explain why. Sometimes I don't even seem sick as far as others can see so how to define the problem? I am going to try to keep a more regular account of what's going on so maybe I'll get a clue.
At the moment, I'm dealing with the side effects of an IGG infusion and the side effects of the counteracting meds. I also have a UTI that started last Saturday so I'm taking my old friend Cipro again. I get a lot of UTIs.
I've been having a lot of pain in my right hip & right shoulder. Sometimes it's difficult to do things because of it.
That's a start. I'll try to write more often.
We'll see how this goes.