I've been feeling very alone lately. There is not much for me to do here. The days just seem to melt into one another. I don't feel depressed. I just wish I was able to do more during the day. That I had something to do.
Everyone here has some purpose. Me, I can't seem to keep my eyes open past 7.
Lately I have been sleeping horribly.
I have no trouble falling asleep.
Staying asleep is the problem.
This morning I was up at around 4ish. I was very happy to see that NYPD Blue was on TNT. So I got my meds ready and watched it.
I would love to get out today but I have no car. Gary, Jr.'s car is in the shop so he must take mine to get to work. That is more important than me going shopping and spending money. Don't you think? Especially considering the car repair will cost $790.00. Working breaks and exhaust system are important.
Wilson, our new puppy, is doing well. He has already gained 4 pounds (it must be more by now). He still cannot go out for a walk where other dogs might be. He is too young for his rabies shot. Wilson has been sleeping in bed with us. It works out well when I finally get back to sleep and want to sleep late. He just lays there and waits for me to get up. He is a good boy. Except that he likes to nip at me. I think he is teething. We bought him a lot of toys so when he starts nipping we just give him one of his chew toys. I'd include pictures except that I forgot the code to enter to add a picture in my journal and when I try to add a picture above my computer freezes. Gotta have Gary, Jr. look at it. Hey I just remembered the code, I think.
Tomorrow I have a rheumi appointment. I am going to take the NYC Access A Ride there. He wants to follow up with me since I was in the ER last week. I am flaring and my electrolytes were very low. The fentanyl patch seems to be working. But fatigue has been a major problem. Plus my skin is very itchy.
I'm doing somewhat better emotionally. Thank you so much for your comments and emails encouraging me. As my mood above says, I am still feeling frustrated. I guess that's okay. It will pass.
Please pray forLoretta's Life with Lupus sister and mother. Read her journal. Also Karyl, Kathy and all of my Lupie friends. They all have woes other than Lupus going on.
Thank God our central air conditioning is fixed. Thank God that hubby is talented and can fix stuff. The heat was really giving me a hard time. I was being a real horror too. Just couldn't take the heat. The temp in the house read over 90 degrees.
Have a wonderful day!
I’ve been MIA. Not only from writing in my journal, but from my life
Lupus is a torturous illness.
Lupus doesn’t allow you to live your life. In my mind I make plans to do stuff but my body does not allow me to put those plans into actions.
Living with Lupus has changed my entire life. There is a saying………”I have Lupus, but Lupus doesn’t have me!” I’ve been trying to live by that quote.
It’s amazing how your life can change. One day you are working. You’re body is fit. You go and do. Then one day things are entirely different.
There are so many things I want to do.
Work in my garden.
Cook real meals for my family.
But, most importantly, be able to get up in the morning and hop out of bed, get into the shower and go about my day.
I can’t do those things.
So for the past few months I have been feeling sorry for myself. It’s the summer. A time when I would be doing stuff. I don’t wallow. But, I am worn out.
My pain has been under control for the past day or so. This is only because I gave in and went to see a pain management specialist. Dr. P. prescribed a fentanyl patch. So far so good.
Although, my exhaustion is running rampid. I am determined to fight this.
I’ve made concessions.
Instead of planting and tending to my backyard garden, I’ve been container gardening.
I’ve been cooking meals in a crock pot or the convention oven.
I take my shower before I go to bed in the evening. Even though I prefer that freshly showered feeling in the am, it’s just not an option.
I hired someone to come in and clean the house.
I delegate chores now.
I order dinner more often.
I buy ready made food.
These were things that I never did.
I have made other concessions too. I give in to the fatigue and nap when I need to. I pace myself when doing stuff.
I’m tired of being sick and tired. I’m hating Lupus. But this is what my life is like now.
I have to make the best of what I have been given.
Loretta, after writing in her journal about how she felt and what it was like to live with lupus, said that she wasn’t complaining…….simply stating the facts.
I was never one to complain. Though I do now. I don’t like this new personality trait.
I'm lost in a fog that I cannot escape from. It's everywhere. My brain floats in this confusion and try as I may I feel trapped here.
Even though I try to live with this enemy called Lupus, I have surrendered more often than I wanted to. It's difficult to hold your head up when it physically is weighted down. When you cannot think. Therefore, unable to act.
Every muscle and joint in my body feels shackled. The perplexing fatigue saddens my life.
I understand that this will pass. I understand that some time whether it be soon or not that I will feel better. But that does not help me now.
I hate Lupus.
I know that this is because of my recent bout with pneumonia. But new things have happened. And, I find it difficult. Just when I have learned to live with what I think lupus has done, there are new and unpleasant things. My voice is raspy. Its been this way for weeks now. I am worried that this will not go away. Even with my doctor telling me it will, I don't think so.
I will get through this just as I have gotten through everything else. It still sucks.
Life here with LuAnne and Lupus has been very eventful. For the past four weeks I have been very ill.
I picked something up when Gary and I went to visit my great nieces and nephews. I can't resist spending time with those little folks. Three great nieces and two great nephews. Included in this are a set of twin girls. And, being so adorable I cannot say no to hugging and cuddling them. This comes with a great price on my part.
If you are a "normal" person and you catch a cold, maybe you are sick for two or three days. But when you are like me and have a chronic illness colds do not only last three days. Oh yes, it started out as a little cases of the sniffles but that was short lived. Within two days I was running a fever and hacking my lungs up.
A call to the doctor was all I thought I needed to do. Antibiotics were prescribed with me promising to stop in and get a chest X-Ray.
Anyway, I could keep rambling here. But the way things turned out is that I developed a raging case of pneumonia. Three weeks into this (and three different antibiotics, steroids and various codene cough syrups) I was not getting any better. I really did think that I would be able to shake this off but to my dismay I couldn't. Last Saturday morning I got worse. The coughing was out of control. Plus I had developed a temp of 103 and the most horrid headache.
Then I could not catch my breath. Pretty scary really. But I tried to wait to wake Gary up because I knew he was so tired and his back was hurting him. At around 8ish I woke him up and gasped "Call 911!" Everything after that happened so quickly. I don't remember much of the ambulance trip nor do I recall the ER.
I eventually found out that the little thingie they put on your finger said that I was breathing in 87% on 3 liters of oxygen. Off the oxygen I could not catch my breath. I was admitted.
I spent 5 nights there. Breathing O2, getting breathing treatments and IV meds. I don't know if any of you have been on high dose IV steroids and albuteral ever but it doesn't make for a nice emotional wellbeing feeling. I was crawling out of my skin.
Well, I am home now and still not great. But much better than I was. I'm still taking steroids and antibiotics. The doctor said this is going to take a while for me to recuperate from. I was in a bad state.
Welcome to lungs and lupus.
Throughout all of this my hubby has been there for me. He has conforted me. Consoled me. Put up with my moods. Played go between with doctors and nurses. There are no words to thank him. But as he says, "In sickness and in health".
First off I would like to apologize for not being very diligent in reading journals lately.
I've been sick. I had (have) a bad chest infection. It took changing antibiotics two times, two puffer thingies, Clarinex, some new type of cough med that is shaped like tiny Vitamin E pills. They call it pearls. Also, I've been taking Lasix for the fluid in my lung. And, more Tylenol and Advil than I can count.
You do know what taking all that medication has done to my INR levels. I've always been screwy when it came to keeping my INR therapeutic. Within the last three or so weeks since I have been sick my levels have been too high or too low. Currently they are too low (1.7) to be exact. So between that and hacking constantly (with blood in it), I went to the ER this morning. The chest X-Ray was pretty good. It appears that things are calming down in my lungs. But, this coughing.... Oh this coughing is driving me crazy. I think that I have popped a rib or two. Have this pain on the outside of my chest on each side. But we all know that when you have a chronic illness such as Lupus we don't heal as quickly as others. My daughter had what I have and she was better in three days. I am going on my third (or is it forth) week.
Being sick has knocked me down more so than other times. I cannot walk up the stairs without feeling very winded. It's as if I am suffocating.
On a more positive note........ John and Krissy ( Sometimes I Think) are home now. Prayers were answered. John is doing wonderfully, I am so happy. Check out Krissy's journal and leave a positive comment.
We are planning a trip to see my Mom, Brother and his family down in South Carolina. We are going in May. I'm so excited.
As you can see from the time of this entry I am not sleeping. It's been a bad couple of months as are as my sleeping is concerned. Loretta (Life with Lupus) writes about this in her journal. She calls it having sloppy sleeing habits. Time to go back on Ambien or Lunesta again. I have to if I want to be able to function at all during the day.
Hugs, Lu
Following Dawn's lead Carpe Diem - Seize the Day I am going to write about what having a chronic, invisible illness has given me.
Living with a chronic illness is quite lonely even when you have a loving family. I have found new, wonderful friends since I became ill. Two in particular..... Donna and Hilja ......... We were message board buddies at first but then we became true friends. Visiting and talking on the phone. We socialize with each other and our spouses. It's totally wonderful because I can be myself and I don't have to let the limitations of my illness hinder me. I love them.
As I love all the other friends I have made online via the Lupus Message Board or through this journal. I receive from these friends something that I hold so very precious. Thank you.
And, this not being in any particular order, there is my amazing husband, Gary. I was blessed the day I married him. The blessings just keep coming. He is my friend, my lover, my care giver and my soul mate. Gary has proven time and time again how special I am to him. I don't think their is a luckier woman alive.
My children, Gary, Jr. and Lauren, are my pride and joy. They are everything I could have prayed my children would be. They are kind, considerate and loving. Not just to me but to everyone. I always hear from others how wonderful they are.
So, even though I have been given this burden called Lupus, I am luckier than most.
Thank you.
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