Self-Diagnosis

One of the great banes of my existence as a person with lupus is the almost daily self-diagnosis. Is it serious or merely annoying? Is it arthritis, pleuresy, indigestion, angina????????
As you can imagine, sometimes it is vital for me to make a determination. Should I call the doctor or not? Is it serious enough to go to the ER... again (God forbid!). One big problem is that sometimes when I'm really sick, I am the worst judge of what should be done. I have a lot of difficulty deciding on medication or a course of action. Fortunately, my family is learning this.

Then again, sometimes I find myself trying to figure out exactly what is wrong with me and I have to stop and say, "Okay, is this life-threatening? No? Then screw it. I have lupus, I don't feel well and that's that."

Long time

Well it's been a while since I posted. Things are about the same. A month later and I still haven't learned to take it easier after IGG.

I still get hit with weakness & lightheadedness suddenly. There's very little warning. I'll be okay, then tired then wiped out. Very little time in between. It can be a little scary when I'm out by myself but I'm learning to do what I have to to take care of myself. I go to the front of the line or take a seat as needed. People are usually understanding.

Still dealing with boredom and a growing tendency to stay at home. It gets harder and harder to get myself out of the house. I'm going to work on it, though.

: >(

I'm getting weak fast today and my neck and head are starting to hurt. My chest is starting to hurt also. It's happened a few times lately. It feels like pressure, like I have to make myself take a deep breath. Maybe it's just the weakness.

: > [

So Monday seemed about the same as Sunday for a while but as the day progressed my neck and shoulders hurt worse and also developed into quite a headache. It all grew progressively worse until at bedtime I wasn't sleepy and if I had been the headache, etc wouldn't have let me sleep. I spent several hours on the couch hoping the pain would fade and I could sleep. It was a very long miserable night. At some point it finally dawned on me that this was part of the IGG reaction. The reaction has been so much less I forget about it. Each month, usually later than I used to feel it, I get sick, then sicker and finally I realize that it is the IGG. I have really got to remember that the week after is a time to rest. I think it would be easier if I weren't trying to do too much. I need to get a lot of movies and simple food in the house and just rest all that week. Maybe next month I'll learn.
Back to Monday night. I did finally drift in and out of sleep until about 6:30 when I got in the bed with my husband. After he got up, I told him what had been going on and we decided that I would take plenty of pain meds and a half of a Xanax to help me relax and go to sleep. I threw in an extra 10 mg of prednisone to be sure. He made me a piece of plain toast to get it down because I was also nauseous. I finally slept until 11:30 when he called to check on me and decided to come home. I went back to sleep until he came. He fixed me a peanut butter & jelly sandwich and we watched a little TV until I drifted off again. I slept until 7 or 8 that night. I ate a piece of cheese toast and then went to bed. I read a while, took a sleeping pill and went to sleep.
I got up the next morning and my daughter and I were going to try to go for a walk around the park. I ate some cereal and then got up and put some clothes on. By that time I was about to fall down from weakness and dizziness so I hit the couch. We decided to give me time to rest and maybe we'd just walk around in the immediate vicinity of my house. I rested a while and we tried walking to her car to get something and I had to sit in the car to rest. After a bit she helped me back in the house and to the couch. I rested the rest of the morning and after lunch we planned to go pick up my car. I got to her car fine and when we got to the shop I walked to my car and spoke to the man then had to sit on the bumper and have my dtr support me. We went and ate lunch then came back. I got straight into the car and drove home where she helped me into the house. We almost didn't make it. I was falling out on the porch. I was extremely weak and upset. I hate that totally weak feeling. I feel weak and dependent enough during normal times but when I'm like that, I fall apart emotionally. These feelings are not me and that makes it worse. I want to tell people that I am a strong woman. I can take care of myself. I can support myself, but it's no longer true and that is very hard to accept. I guess humility isn't one of my personality traits. Somehow, I have to learn to accept the way things are and be strong in that. God help me to do that. (And I constantly thank him for my family. I couldn't make it without them. They keep me somewhat normal. Weird, huh?)

: > /

My neck, shoulders & back have been hurting. The neck & shoulders are the usual. I did the neck traction last night. I'm trying to do it about every other night. When I do it every night it seems worse.

The back is near my left hip and sharp pain. I developed a unique problem yesterday. Starting late morning, my left elbow started to hurt whenever anything touched it. It got worse during the day. It was not a bruise, only the skin and it hurt terribly when it was touched. I had to put an ace bandage around it with padding to sleep. It's fading this morning. ????

I just went to try to move a few bulbs. I got tired & out of breath (fast) and my chest started to hurt the way it did when the artery was blocked. I'm sure it was just the heavy breathing in cold air but it was still a little scary.

I came in the house and discovered that half of my bottom lip is swollen. ???? I don't know how or why.

I'm trying to work on SSI disability paperwork but it's tough to keep at it. I have to take a lot of breaks. Not only does all of the writing hurt but it makes me feel very stressed & upset which makes me feel worse in general. I'm really close to the edge lately. I don't think I can stand much more stress & worry. At least, I hope I don't get the chance to find out.

: > (

It's not been a particularly good week. I don't have energy. I'm not focused (well a little worse than that, more like spacy) I've been depressed and I have been hurting a lot. Still trying to deal w/ the disability problem. My friends and family are very supportive. One said that if I can't get disability, who can. I wish that the disability determination people would speak to people who know me. I can't work whether I get approved or not. I don't know what we'll do if I don't get the disability insurance and eventually SSI disability. We can adjust to that drop in income but I don't think we can manage without it totally if we're going to keep our home & car. I know God will take care of us and it'll be alright. I just wish it was settled (favorably) so I can relax. This ordeal is not helping.

I had an IGG treatment yesterday. I was feeling especially bad and the 3 hours or so I spent resting in the recliner for the IV did me some good. I hope the IGG does.

: > /

I have had a long hard week and I'm tired. I'm stiff and achy and moving like an old woman.

: > (

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.

: > /

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.

: > )

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.

: > ) :>(

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.

: > )

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.

: > /

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.

: > /

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.

Not Sleeping and on to Accepting

Now here's a problem that you don't hear so much about with Lupus. Insomnia. I woke up about 3:30 and for the last hour have been cleaning up my email account. I'd rather be asleep. This has been a problem for quite a few years but has gotten much worse in the last year or two. I am not working and rarely must be up in the morning or doing anything vital so this is merely an inconvenience, possibly an annoyance. However, when I was trying to work every day it was one of the many large and small problems that made life very difficult. I do have several options for sleep aid (as a matter of fact, I took a mild medication for it around 9:30 last night) but I prefer not to take them if possible. When I was working, I didn't always have a choice. Trying to work all day five or six days a week has been hard enough for quite a while without a lack of sleep.

I have to admit that since I have been on disability, from June, I am frequently amazed at the fact that I was able to work full time for so long. It's amazing what one can do when you have to. When I was working that was almost literally all I did do. I got up and dragged myself through getting up & ready in the mornings, dragged myself through the day, came home and recovered to do it again the next day. So many days (almost all for the last many months I worked) I would have to find a few private minutes here & there to give in to exhaustion & tears so I could go on a bit longer.

It is amazing what a person can do if they persevere. We can push ourselves minute after minute, hour after hour, day after day, month after month when it seems impossible to go on. However, I've discovered that there is a limit, I call it The Wall.
All of my life with lupus I've been able to persevere. I've thought of my disease as the enemy and I have been at war for approximately 25 years. Sometimes the enemy was quiet and hidden but usually there were battles to be fought. I've had to remain vigilent because if I allowed any weakness on my part, the enemy would gain ground. I eventually learned that there are times when the enemy is stronger than I am and I would have to give in. But just for a while. Even in times of surrender, I knew I had to start fighting back as soon as possible, for even though surrender was often inevitable, it could be a trap from which it can grow harder and harder to escape.
So I've fought. I've always felt that though the battles didn't always go my way, in the long run I've been the stronger.
Only in the last (approx) year have I felt that maybe the enemy is getting stronger than I am. Maybe little by little the tide is turning and the enemy is winning. I still continued to fight but more and more it took everything I had.
And then I hit The Wall. This is when I learned that human endurance has a real limit, one that my will cannot overcome. I calll it The Wall because unlike in the past, this time I couldn't push on through it. I didn't understand right away but it finally became obvious that I'd lost a big battle, the biggest yet. I had to let the enemy take a big part of my life in order to save the rest. A strategic withdrawal.
It hasn't been easy to give in. It's something I'm still learning to accept and deal with. As in the past, I have to surrender but continue to fight to keep from giving more than I have to. As has been learned by many people in many situations I am learning that surrender can lead to good things. I now have so many of the things that I had to give up in the past just to survive. Now that I am not devoting my life, energy and will to a job I can use what I have for more important things. Most of all my family but also simple pleasures I haven't have time or energy for.
I've been surprised that after giving in to my new situation my health is not much better than I was when I quit working as far as what I can handle on any given day. I do pretty well day to day, here in my home with plenty to occupy me when I need to rest.
However, it doesn't take much to show me that I still am not back to what I was. I don't know if I ever will be. I haven't given up hope. Just because improvement is slow doesn't mean it isn't going to happen. But if this is how it is, I'm learning to accept it and be glad in what I have. I am learning to thank God for what is and pray that He will help me make more of whatever I have.

The Fire Swamp

For some months I have had to have an infusion of a whole blood product called IGG. This is in an attempt to stop infection. I've had many infections a year for a long time. Antibiotics have always handled it but after so many years, the concern is that I will one day get an infection that is resistant to antibiotics. That is the reason for the infusion. The IGG helps my body fight bacteria.
The first time I had the infusion, I was a little sick with usual lupus symptoms, weakness, flu-like pain.
The second time I had the worst pain in my head that I've ever had along with constant vomiting. I went to the ER and was given something to control the pain and nausea.
The third was almost as bad but I was able to bear it without going to the ER. I had been told that having the IV drip more slowly would help. In my case it didn't.
The fourth time I was given Aloxi, a medication given to chemo patients for nausea. It made a huge difference. I still got pretty sick with fever, chills & pain like needles all over but at least the headache wasn't bad and there was no real nausea. (I hate that more than almost anything.) A vast improvement.
This weekend was the fifth. In addition to the Aloxi, I was given a strong steroid. It seems to have worked. I have been a bit weak and haven't felt well but there have been no severe symptoms.
I thought I would be living with severe illness for several days a month and now it looks like an extra few days of rest. I am feeling very blessed. I thank all of the many people who have been praying for me.

An explanation

The immune system normally protects the body against viruses, bacteria, cancers and other undesirable invaders. In an autoimmune disease like lupus, the immune system loses it's ability to tell the difference between undesirable substances and it's own cells and tissue. The immune system then makes antibodies directed against "self", which causes inflammation and damage to a person's tissues and organs.

So what does that mean? Lupus almost defies definition. Having the facts about it doesn't mean understanding it. That is the reason for this blog. This is what lupus is.