fatigue or laziness...

Today, I spent almost all day in bed to make up for all the activities going on last week. I slept, watched tv and ate. That's about it. Nothing productive at all. My daughter begged me to take her anywhere, even the stationary store (she hates the stationary store). All of her friends are busy. This weekend the time changes. I know I just don't adjust well to changes. Hopefully I will be able to last at work. I always seem to have that problem when the day gets longer. I took all my usual pills and then some. I feel swollen. I have been taking my diuretics, but I don't know...when I eat I feel like I have bad heart burn. If I don't eat I'm tired. Well my daughter is having her cycle for the month. I haven't had a period...for more than a few years from the chemotherapy treatments. It is so weird when I have to buy stuff for my daughter, so many choices, so many different brands. I feel like my body is trying so hard to have a cycle when my daughter does, but it just doesn't happen. We all get cranky, swollen and just feeling like crud. I know my husband understands that I battle fatigue everyday, but today, I almost felt like I had become lazy. How does one really tell the difference between fatigue and laziness?

too many?

How many diagnoses does a person need? As much as they ask for? For as many symptoms as they have? I just know that I have many, to the point that sometimes I can't remember all of them. I know for sure that I can't recall all of the medications I have taken or even tried. I want to know why: (a) an answer; (b) the patient will stop harassing; (c) have no clue? The money that is spent on health care is amazing. I can't even begin to tell you how much I have spent. Especially on medications. Were they really necessary? I was surviving at one point without any medication, now I have a whole cabinet full of medications that I am supposed to be taking. The only way that I have found to get off a medication, is to just stop it myself. Say, "oops, I forgot." And I have survived. But others...(my doctors) say that if I stop, that I will die. Can they be ever so blunt? That my life counted on several mixes of pills depending on what kind of symptoms. I am allergic to what seems like EVERYTHING. I see specialists in all kinds of fields and yet it is never enough. The testing...has to be the worse. Yes, for one, two, etc. You will need this to fix this, that, etc. I am so fatigued. But I can't rest. My anxiety overcomes me. And here I am, blogging. I have pain medications, but I don't want to take it because my bowels are bad enough as it is. I have lidocaine and frankly, it is just GROSS. I've done many nasty things for treatment, but this is just insane. Taking the multiple laxatives...stool softeners...enimas...high fiber diet...nothing works.

sleeping mix of the day...

1 mg Xanex
10 mg Ambien
50 mg Benadryl

TGIF

Friday, my favorite day of the week!! I am trying to relax from my day at work. I just got off the phone with my uncle. I had asked why, after numerous attempts to talk to my cousins and nephew, I have been ignored. My daughter gets along with my nephew, her cousin, but we live a bit far from each other -- about an hour. I have offered to get him and bring him back. Or just do something in his neck of the woods. No, nope, nothing, not even a response. I guess I should take that as a hint? Apparently, my uncle has told me that him and his wife had been going through some marital problems. His wife "apparently" read some of my emails to him and felt that I was his "advisor" and encouraging a divorce. My uncle is years older and much wiser than I. I was trying to be there for him, when his family annihilated him. I told him that I visit with him and a family lawyer if he chose to go to one. I work in a law office, but I am not an attorney, nor do I pretend to be one. But his wife has portrayed to the rest of my family that I am trying to break them up. So my daughter, who has nothing to do with any of this...wants to spend time with her cousin, can't because of some emails that were written between myself and my uncle. Retarded, right? Sad and disappointed. I have at least tried and extended an invitation and if they choose to continue to ignore us, then what else is left? I guess we resume our other activities. What does that teach my own daughter about family life? I hope that she is a devoted person to her family. My family is priority, always. I guess we can't pick who or what our family is, we are just born into a family, supposedly. Life.

another parent meeting

Indeed, another parent meeting. I have made it through the hour long meeting and have already sent out an email to the coach to ask any other questions that I may have missed in the meeting. I am scared that my one and only child will be cursed with the same disease. She has symptoms of arthritis, but then again I could just be biased. I want her to do all the things that I used to be able to do and now I have no control and no ability to do so. Even the little things like opening jars...when that finally happened...I was saddened even more. It seems as though a little of me, leaves me, every day, hour and minute.

lagging

This morning was quite the painful experience. I could barely open my eyes and my right eye just aches. My feet ache horridly, but worse, my whole body just hurts. I am moving in super slow speed. I managed to get to work and sit here. I took a Vicoprofen, waiting for that to take into effect, my knees are just aching as I sit here. My boss asks why i'm not all happy and bushy tailed? I explain that I am in pain. He asks why? I say I woke up that way. I have worked here for over a year and ever since I have started, I have always been open about my Lupus. But for some reason, they don't get it. My firm even donated for the Lupus Walk last September and have always been manageable with my time and doctor appointments. Everyone just sees my physical appearance and nothing else. I see these people five days a week, at least 10 hours a day. I take medication every day and until just recently have been able to stop my Cytoxan treatments. Do I have to look like I'm dying to feel like I'm dying? Argh...

amazed

I finally got home after my long day. I went to my daughter's school and met with every single teacher, with the exception of one. I run to the grocery store to pick up my refill of Cymbalta and Restoril & I seriously hate my HSA plan. My work made it seem like they were going to pay my $2,000 deductible. Well they are, in time. Apparently, it is a coy way of keeping an employee. They fund it each month so that if you quit they didn't pay your full deductible. Yes, it SUCKS. I had to call my husband to bring my HSA checkbook and write another check for the balance. Let's say it was over $200. I decided to do a little grocery shopping while I was waiting. Well I ended up doing quite a bit of shopping. Now, I barely can keep my eyes open and realize that I need gas. I just do it. I get gas, yes while the car is running, as I am freezing. My daughter and I are in the car, trying to get warm and finally it's finished, yay!! My Raynaud's sets in and my hands are aching. I get home, grab the mail and head upstairs. First thing, take out contacts, take off clothes and jump into a hot bath. OOOoh, just what I needed for my sore feet and body. I re-registered my daughter for high school on the recommendations from the parent/teacher conferences. Now...I'm just hooked to being online. I check my e-mail and decide to post a little blurb. Ha!

sleeping mix of the day...

30 mg Restoril
1 mg Xanex
my favorite smell: husband

currently my daily mix

My current mixture of (daily) medications:

10 mg Prednisone
120 mg Cymbalta
225 mg Lyrica
2000 mg Keppra
400 mg Plaquenil

animal lover?

My daughter signed up at the local Humane Society to become a volunteer. We both attended an hour informational session last night. As I was trying to unwind after my long day, my daughter is very excited. She is so excited that she wants to foster a kitty right off the bat. My first response, no. My second response, NO. I think she is working on her daddy for some results. It is a 6 month commitment, at least 2 hours per week. Since she is underage, an adult will have to be with her -- meaning me. We have two dogs at home, whom she doesn't take care of. Her reply to that...those two dogs at home get better treatment than me! She continues on how they should be called semi-human. What a drama queen. She learns from the best, I suppose.

bits & pieces

I guess since I have found this...I should try to update with my bits and pieces...that I can remember, right at this moment.
I have received word that I am an overbearing mother. I have tried my best to be there for my daughter. But others judge me, especially her teachers. I am requested to attend a parent/teacher conference tomorrow about my loving child and how well she is doing, but that she should attain "her" goal and/or "her" decisions. I have asked my daughter what she would like to focus on...her answer, "mom, you pick." I have also asked her what high school classes she would like to sign up for, "I'm not sure, why don't you pick...like you always do." She was quite content to the items that I had picked. After registering, I had sent e-mails to various teachers to make sure she is adequately prepared for this transition. That is when I receive e-mails referring to having "her" make the decisions. I call my daughter to ask what these teachers are referring to and she had neglected to tell me, in her words "it has slipped my mind?" The counselor had pulled her out of class to discuss any anxieties she may have about my expectations. I have high expectations for my child, as any mother would. I also believe that I know my child the best. Yes, I can push very hard. But if I don't...she won't try. I am always intertwined in my child's school work, online discussions, relationship with others, etc. I probably have more reign and information than other parents. I always keep her visits supervised whether or not it is with the same or opposite sex. If she feels compelled or otherwise uncomfortable that she should call me under any circumstance. My daughter and I have a unique relationship. We can be close, but I am still her mother and have all authority. Most people think we are sisters, which I hate. Yes, people say I should be so ecstatic, but I am NOT. I am not amused. But I guess it is with life and the challenges that comes with that I learn my every day decisions. Right?

Since then...

My never-ending saga continues...and I have finally heard from my nephrologist that I do not have to do the Cytoxan treatments. Yay! Finally, good news, right? As of my last post, I am finally on so many anti-seizure or just plain out seizure meds that my memory has left me. The only reason I even remembered this site was...while I was going through the pages of my daily book, I saw scribblings on the side with regard to this site. Not only did it take me a LONG time to even realize what my user name and password was, but inevitably, my life is full of days that are missing. My family has told me about my changes. My disregard for everyone else's feelings, except mine. Yes, selfish me. I hope that I can vent online for a better person, in person. If that made any sense.