It gave me cause to re-focus on what is truly important. It is so easy to get caught up with taking care of Lori, working, shopping, cooking, cleaning, blah, blah, blah. Of course all of that stuff is important, you have to cook, clean, etc. to survive. We all do it. But by focusing strictly on the action, I was missing out on everything going on around me while I was “doing everything”. I used to notice the sunset on the way home from the store, or the phase of the moon. I used to listen to Lori laugh while I work as she watched her squirrels outside of her window. While washing dishes I would look out the window and watch the birds or the dogs chasing chameleons. That was one of the things that keeps me going, finding something good and positive, no matter how small, in every chore I had to do. It is the only way I know to get through it day after day without it getting the best of me. I was losing that, now I have it back again.
I had also forgotten just how hard it is on Lori. It is what we do. She sleeps, plays with her girls, watches the squirrels, plays games with the boys, and keeps on top of the laundry (with a little help). For the most part I do the rest. Neither on of us complains we just do out thing day after day. Since there are no more real “good days” or “bad days” it just is another day (even a so called good day would be a terrible day by normal standards). Our routine has been so entrenched into our daily lives we realized last week we hadn’t found Lori a new Rheumatologist or Nephrologist. It has been six months since her last visit to either. I digress though. I was talking about how hard it is on Lori.
She is a 46-year-old woman, who, for the most part, can’t do anything. Plain and simple. Everything she does now, no matter how small, puts her out. We were watching something on the Discovery channel the other day and a commercial came on for all of the fantastic places in the world to visit. Lori looked at me and said, “I can’t go to any of those places” and she was right. If it is too hot, too sunny, or requires any walking or even standing, she can’t do it. We had our first dose of this last year when we went away for vacation. A lot of the things we had planned she just couldn’t do. While I know there are still many places we could go we have also come to the realization that there are many of our “dream vacations” that just simply will not happen.
She no longer drives. It is too much on her. In the last 2 months she has driven about 2.5 miles. One trip to the bank, pharmacy, and back. There are many days where she even has trouble driving one of the motorized carts in the stores. More and more she is dependent on me pushing her in her chair. This limits us to what we can buy while we are out too. If I have to push her she has to be able to carry whatever we get. So much for going with me to the grocery store. And it’s getting to where she can’t do more than 1 or 2 stores at a time, even with me pushing her in her chair.
She wants to do so many things. She has such a creative mind. If she has some type of project to do it will take her days. Just getting everything out and ready and she has to call it quits. Not just for a short rest like it used to be, for the whole day. Something that should take her a couple of hours, and a year ago might take all day now takes a couple of days. It gets worse as the months go on. Due to the fact that we deal with this on a day-to-day basis it is only when we step back and look at something that we realize how bad she is. The struggle she goes through just to do nothing everyday is overwhelming and frustrating to say the least.
Did I mention she’s yet to be approved for disability? Unreal. But that’s a story for another time.
I have been very lax at updating this blog. It is hard saying the same thing over and over. “Lori had a bad day today”. I try but my writings just don’t do Lori’s overall condition justice.
That is one of the problems of communicating through the Internet and not face-to-face. Everything is just words on a page. You can USE ALL CAPS TO STATE YOUR POSITION (as if you are shouting) or you can add you own emoticons to help set the tone of what you are writing. ;-) or :-0 or even :-x There are hundreds of them and just as many “smileys” you can add to some messages, posts, emails, etc. The problem is they’re still just characters on a page .
Had the friend I mentioned at the beginning of this post been a real world friend I talked to face to face or even on the phone and not just a screen name, I’m sure I would have know her true condition. Those of you who know Lori know her eyes tell all. That is something I can’t get across by using words or posting in a blog.I know, based on the emails I receive, that many of you who know Lori look to this page for updates. I would encourage you to call her or email her directly. If she can’t talk, I’ll take a message and she will call you when she can. If you don’t have her email address or need our phone number you can email me by clicking on the “view my complete profile” link to the left and then click email. I know it would, and does, brighten her spirits when she talks to friends. I will do my best to continue to update this blog when any new things arise though.
Speaking of which. . .
We spent the morning in the Emergency Room. Lori has been having a lot of trouble for about a month now with nausea. It might even be longer. Dr. Peditto seemed to think Lori had some type of stomach flu or virus. Due to her weakened immune system the stomach hasn’t healed properly after the virus is long gone. Dr P ordered Lori to take Previcid to help the stomach heal. She also requested an ultrasound and an MRI of the abdomen to see if anything is wrong. Besides a hemangioma on her liver everything was normal. (We have to do further tests on the Liver but it all should be OK and should not have anything to do with the nausea).
If last night is any indication, the Previcid isn’t working. Lori got sick at least 12 times in a 16-hour period. In addition she had a very sharp or burning pain in her abdomen just above the belly button. I called Dr P. this morning and told her what was going on. She suggested taking Lori to the ER. The pain was so intense and she was so weak I ended up calling an ambulance to get her checked out right away both at the house and when she arrived at the hospital.
After some lab tests and a quick examination by the ER Doctor Lori was released. She was told to follow up with Dr P tomorrow. They did give her a shot of fenegrin (for the nausea) as well as a shot of morphine (for the pain). She has been sleeping ever since. Hopefully she will sleep OK tonight and tomorrow will wake up feeling at least a bit better.
The early release from the hospital based on a couple of labs and a quick examination had me worried (still does a bit). Lori and I both know that there is something more going on than is showing up on the initial tests. She is just too weak. The good part about it is she does seem to be resting peacefully now. That is important. Tonight will tell…
I will post results of tests and or Dr visits as they happen. In addition to going to see Dr P tomorrow we have both Nephrologist and Rheumatologist visits scheduled and I’m sure there will be a Gastroenterologist visit very soon.
In the mean time I encourage everyone who reads this to step back and think about what is truly important to you. Start focusing on that. The daily grind and the mundane tasks will get the better of you if you don’t. It won’t help get rid of any of the responsibilities you have but it will help you do them better and enjoy something about them along the way.
