Back from the Beach : - (

Wow, it's been a long time since I've been on here. I haven't been doing very well. I assume it's the increased sun, although I try to be very careful about exposure. I have a lot of all over, stinging, aching pain and get very tired easily. Late May and early June I believe I had kidney stones but never saw a dr. It was extremely painful, at times the worst pain I can remember, in my back on the lower right. At times it felt a little like I was getting a UTI but mostly it was just my back. Once it was gone, it hasn't come back.
I just got back from the beach and the consequence of the 4 day vacation & an all day ride home (stopping along the way to shop and taking the scenic route) has been exhaustion and a lot of pain, especially in my joints. My right foot feels as if the upper bones are broken (not really broken, just feels that way). Also my neck, shoulders, hips/pelvis & knees. I took a Lortab at bedtime and it's helped but I can't sleep so here I am.

: > /, : > (, : > )

I have been keeping a running document with a brief note of my status each day. (Well, most days.) Looking back until 3/19 my last post here, I've had some joint pain and a bit of trouble with my neck but nothing too bad in the pain department. Overall my energy has been better than usual. I do seem to pay the price with a lot of times of real exhaustion. I have had a problem at times with slowing down when I'm tired. I can feel that I've done too much and know I should spend some quiet time on the couch but keep popping up to do something else. This continues until I can't pop up. I guess it's the extra prednisone.
I was on the go for 2 1/2 days last week and paid the price for the rest of the week. Although there were times when I still had some energy, they didn't last so long. I spent a lot of the last part of the week down or moving very slowly. Yesterday and the day before I started pretty well but totally zonked in the afternoon. I even took a nap yesterday. I paid the price for that last night. Even with a sleeping pill, it took quite a while to get to sleep and then I didn't get up until almost 9:00 this morning.
I am doing well this morning. Up and down, totally unpredictable. Hmmm, sounds like someone with Lupus. :)

: > ) :>(

Well, once again, it's been a while. Good news - I was approved to received Social Security Disability Benefits. That's a load off of my mind. Now I just have to sue CIGNA to get what they owe me. I have learned that, thanks to ERISA, they have absolutely nothing to lose by turning down my long term disability claim. Even if I sue them (before a federal judge, no jury) and win, all they lose is what they owed me to start with. No damages, atty's fees, nothing! In my case, it's even worse because my former company no longer uses them for their LTD, no threat there.
The last month has been a continuation of the previous with the addition of some sort of pleural pain (lungs, I guess). I was in the hospital with it when it started because it didn't feel like usual. More good news - my arteries are still clear. Dr A-S said that my kidney function is a bit worse so she increased my Prednisone a good bit until I see her.
Thanks to the aforementioned son-in-law, my car window is up and the car door put back together. We have also had our washing machine fixed. Now my garage door is broken. The mechanical hasn't worked for over a year. We had to open, close & lock it manually. Now the door itself is totally a mess and can't be used until we can get it repaired. (Whine, whine, whine.) On a good note, another son-in-law came over last night to help try to fix it. It didn't work out but it was very good of him to try. My girls did pretty well in the husband department.
I'll see the doctor soon and see what's going on and what the plan of action will be. As I've said before, "It'll be alright".

: > {{

Sometimes it would be good if I could just sleep through a week. This would have been a good one for that.
I don't remember much about Monday through Wednesday except that I took 3 grandchildren to the dentist Wednesday morning (which was the highlight of my week) but while out I put the driver's side window down. It stayed there and is still there. My car now lives in the garage with half of the door missing. I'm pretty much stranded unless I want to get up and take my husband to work (and go back to get him in the evening).
The last month or two have been rough. My arms and shoulders hurt a good bit most of the time and most of the time my left elbow is so painful I can barely stand to use it. I sometimes wonder if I did something to it but I assume it's just arthritis. My fingers hurt and sometimes feel as if they're about to break. One day driving, I had to drive as much as possible with my palms because when I grasped the stearing wheel it felt as though my fingers were breaking or I was damaging them. I'm tired and weak and have pretty much gotten tired of feeling bad and trying to deal with Disability Insurance and SSI Disability, bills, business, groceries, keeping up with and stretching money, car problems, washing machines that don't work, a garage door that doesn't work and hurts every time I have to open it manually. Blah, blah, blah. Did I mention I'm very depressed and whine a lot.
I am greatful for the help I am getting from my family. One daughter has offered to make the calls that seem to be a source of anxiety for me. My husband is usually good to encourage and comfort me. I imagine it gets old though at times like this. One son-in-law out of the blue offered to try to fix my car window. I don't know why he did, but it was so nice of him to spend his valuable time to try to do that.
There are always ups and downs for anyone and very literally with Lupus. I guess this is just a really down, down. I'm not sure that people believe me when I say that I know this will pass and everything will be alright. I'm just very unhappy for now. I'll get over it and go back to taking things in stride better, until the next down.
Meanwhile I hope they will just continue to love me and try not to take my moods personally or feel responsible.
I'd like to tell them what they tell me, "It'll be alright."

: > /

Up early. Can't sleep. Woke at about 4:30 because of a digestive problem. That will be a problem for a week now following the IGg treatment.
This last month hasn't been so good. Not horrible but never quite good. I hope this month will be better.
I have for a long time needed something to occupy me that would help me feel more self-worth. It's been a long couple of years and I steadily declined until I had less and less that made me feel that I was doing something productive. I've tried to look at this as a time to rest and get closer to my family and it has been that. I am very greatful for the time I've had to just hang out with my (adult) children. For a long time one worked at home and that was a great opportunity to be together. Another works nearby and comes to lunch at least once a week which is also good. The other works farther away and then is busy with home and family so I see frustratingly little of her and her family but it's getting better.
One thing has been a big help. For Christmas my husband gave me a drawing instruction book and it has made a very nice difference in my life. I have been surprised how well I've done with it. I can actually draw something and have it look pretty much like the subject. Who knew? I find that I really love doing it. It can be a source of great frustration but also great satisfaction. One thing that has amazed me is that I don't mind showing my drawings to people, even when they are in progress. I have found that after looking at a drawing for too long I can't always "see it" properly and another person's fresh look can help. I have a nephew (whom I am not very close to) who is an artist. Maybe he wouldn't mind a little advice. I can only ask.
I'm starting to get a headache. Heavy squeezing feeling and pain in my neck. I think it's time to stop typing and rest. (or maybe draw a little)