Tuesday, December 21, 2010

Drs. Apt a success

I use the term "Success" lightly. I left with that feeling of not knowing whether or not this was a "Great" appointment. I felt great, but some news had the potenial to be troubling (Waiting on the blood work). Anyways, she really understands me. Knows the right questions to ask and everything.

I started back up on the injections. I am very excited about this, they seem to have worked in the past. The problem for me is that I don't feel like my friends understand what it means. I say all the time that if you are sick please stay away, or at least tell me so I can be aware. Being on a TNF blocker means that if I get sick I have to stop the meds immediately (And I take it every two weeks, so stopping it isn't easy). That means that when I can go back on it I start over. Start getting it back in my system.

Getting sick for me is not what getting sick for a healthy person is like. If I get a cold I also get a flare. So imagine being conjested and dealing with pluerisy or joint pains. Imagine that cold lasting weeks and having the list of antibotics you've try being as long as your arm. And imagine missing all that work.

So to my friends, family and coworkers if you are sick stay away email or call. I wont be offended if you cancel plans I will be over joyed that you thought enough of me to not want me to get sick.

So I'm happily back on the meds. Looking for something for sleep. I have tried everything... well almost everything- tonight a bottle of wine is on the menu- I don't reccommend this I just need the sleep!

Thursday, December 16, 2010

My latest Doctor's appointment

So today I went and saw my Rhuemy. It was really great to see her and laugh and all, but it was hard to talk about what was going on. As you read earlier you know that when I got sick in August I went off everything. I wasn't doing too bad up until a month ago. I have been increasing my pain meds and a few weeks ago I finally got tired of it and made an appointment.

I mentioned two things to her. One some of the chest pain doesn't feel like my lungs, so she doesn't think it's anything but I'm going to a heart doctor so we can get a baseline. My mom had heart issues with her Lupus when she was about my age (Same doctor, and she remembers) so it's better safe than sorry. And two my liver. I have a gut feeling (no pun intended) that something is wrong with my liver. The blood tests say it's normal. But she did more tests and ones that hadn't been done before, so we will see.

So I am back on the TNF blocker and other stuff. She mentioned a GF diet again. I really just don't think I can handle it... I've tried and it is really hard and I have to do it for 6 weeks to see if it makes a difference. I am such a picky eater as it is that if you add that into it I wont be eating anything.

So the bottom line, hopefully going back on some of these meds will help my joints so I can start working out again. My goal is to loose 100 pounds by next year (Every pound is prednisone weight). So here goes nothing...

Wednesday, December 15, 2010

Hello Flare!!!

Ahh, another flare. I thought I had been so good lately but not good enough. As I was dealing with one of the issues this morning I kept repeating "I love having Lupus" or "Lupus isn't so bad". I think I thought that if I kept saying it that I could handle my Lupus, that the flare wouldn't be so bad but I was wrong. I noticed the rash last week, but when it went away I didn't think much of it.

So today starts the rice, applesauce and toast diet... so much fun. Again I always wonder why if I have to suffer with with a crappy diet why can't I loose weight?

So Mr. Flare, how long are you sticking around? you see I have a few things today over the next week, including work, so as much as I'd like to have you hang around can you please just go away.

Thanks- Love me.

Advocacy Day

Definition: The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.

I want to do this, badly. In 2011 it's at the end of February and I plan on going. The problem... I don't want to spend an arm & a leg. So today I posted on my social media that I'm looking for airline miles.
Why do I want to do this? Because I want to make a difference, I want to go to Washington and talk about the need for Lupus research. I want my elected officials to know that people back home need their help.

So here goes, my plea for airline miles is posted here too.

Tuesday, December 14, 2010

Another great tool

I found another great toy/tool. An iPad. Now I know, they aren't cheap but I can't believe how great it is. When I can't sleep I no longer have to drag myself out to the living room to watch tv or keep my mind busy I just turn on the iPad. Sometimes it's hard to hold or type on but it has done wonders for me... I just lvoe it.

Monday, December 13, 2010


I think the hardest part of having Lupus is the exhaustion. I am always so stinking tired. Monday is the hardest. I do what I can to make Sunday a rest day but I can't do it every weekend (Especially during football season). Today is no different, I can usually make it through but by the time I get home I am collasping on the bed. I can hardly hold my eyes open and most Monday's I'm asleep by 8:30. I hate it, I really do.

UPDATE: I wrote this yesterday but I didn't post it... I didn't want to. But last night was a HARD night. Not long after dinner I kissed my boys good night and crashed. Falling asleep at 7:00 is not the greatest idea but I couldn't hold my head up any longer. It's sad that my bed time is before my 9 year olds.

I ended up not sleeping well which makes today harder than yesterday. I feel every rain drop in my joints. Last night i just didn't feel well, couldn't get comfortable. Life just sucked. I'm tired of being on pain meds. Tired of waking up feeling crummy. Will it ever end?

Ok, now that I've let that out, I've decided I'm going to really focus on loosing weight. Prednisone weight is extremely hard to loose. I've tried a handful of times, but this time I'm going to do anything I can... plus I'm not on any meds right now so nothing can hinder it.

Wednesday, December 8, 2010

Lupus & Traveling

***DISCLAIMER- if you are the person traveling with me there is NOTHING in this posts that was negative towards you... it's just my internal thoughts and frustrations with myself***

So a couple of weeks ago I won a trip to Las Vegas for the American Country Awards. My first thougth was to take my husband, but he doesn't like country music so I asked my dearest friend to go with me. When I did this my Lupus didn't come to mind. You see when I travel I get pretty sick, and this trip was no different.

First, we didn't have a direct flight. That should have been a red flag for me, but it wasn't. We had to get up at 3:30 am to catch our flight and ended up traveling for 7 hours before finally touching down in Las Vegas. It takes a lot of energy to change planes. Carrying luggage from one gate to another.

I was very excited to know that is wasn't going to be hot in Vegas... it was perfect right around 50*. So I didn't think my stomach issues would come into play but boy was I wrong.

So we finally crashed at about 9:00 pm. It was a rough day, I was exhausted and beyond my number of "Spoons" for the day (maybe even the week).

My biggest frustration was having my friend see my sick. It was so hard to make 17 trips to the bathroom, not being able to eat and having to call it a night so early. I know this is something I have to get over. And someday I will. But this was a hard weekend. I know it will take a few days to get over all I did.
So today I start resting and getting ready for another weekend full of Christmas events. I can't wait for the holidays to be over.

Wednesday, December 1, 2010

Life is funny

Life is funny, isn't it? Today is a bad day, it's been a bad week. I'm tired and my pain level is through the roof. I just want to crawl under a table. I haven't seen my dr. since July and honestly, I don't want to. I keep staring at the phone telling myself to call, but I just can't. I can't because it means new drugs. Or old drugs that I have tried and failed on before.

Having Lupus has it's ups and downs. (Wait- who am I kidding- what ups?). The meds I try are crazy, the side effects are nuts and frankly I'm tired. I'm tired of the medical card in my wallet having to be changed every six weeks. I'm tired of wondering if the new symptom is a side effect. But most of all I'm tired of finding a drug that works so well only to have it cause a side effect so unbearable I can't stand it.

Lupus is definately a game changer for me. I quit playing softball, I rest more than I play and just last month I stepped down from a volunteer job that I have loved for 15 years. One of the hardest things I have had to sacrifice because of Lupus. But I know that there will be other opportunities for me to help others that wont cause me and my family the sacrifices I don't want to make.

Lupus is a thorn in my side and yet, because of it I have met new friends. Cried with old ones and been there for those going through this dianosis.

Bottom line- I love my life. If a cure for Lupus comes I will be first in line, but for now I will hold my head up high and try and do everything I can to just get through my day.

Support system

Last night I was reminded once again what an amazing support system I have. It also reminded me of those that don't have a support system. I don't know how you go through your life without one.

My husband has been at my side through thick and thin. It hasn't been all roses, we have had our ups and downs.

I have a full time job. Mainly, because I have too. I don't mind working, I actually enjoy it most days. My family needs me to have the job. But because I work some days I get home and have nothing left. I collapse on my bed. I try to get up after Dave gets home and help make dinner but 9 times out of 10 he wont let me (Although, this might be because I can't cook). I suffer from guilt. I hate hearing my son giggle in the other room and have no idea what's going on. I hate the idea of feeling like I need to push myself.. but not being able too. I hate the internal battle I have of "Am I really out of energy today" or "Am I just lazy?". It's hard because my mind says go, go, go, but my body says not a chance.

My husband is amazing, he knows when I am at my wits end. He knows when I just need to sit down. He is amazing. I am so thankful for the man that God brought me. I am blessed.