Lupus Go Away!!

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I began my day like any other. I woke up at ten, had breakfast and coffee, and sat in my chair to watch tv until I was fully awake. Here is where things went wrong.

I woke up at five pm. Yes, I fell asleep again. It was like I was in a coma. I would wake up briefly but couldn’t move. Like I was paralyzed. After a bit I would doze back off. Lupus brain fog. I hate it!!

So despite being back on steroids, I have slept this whole day away. I got up at five and made some soup beans and toast. I know protein is good for me. I also made another cup of coffee. My brain is still foggy. I I cannot believe it but I truly could go back to sleep again for the night. I guess for today, lupus wins. One battle for today is what lupus wins. However, I will win this war!!!

It’s funny how lupus does this.

By the way, I have a question for you all. Do any of you ever get little itchy blisters on your finger tips that burst and itch more? Just wondering.

Good morning

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Well, I woke up today so I am thankful I did. The pain is worse today. I think just going to lunch and doing one load of laundry yesterday over did it. I am so upset.

So, I am in bed today, compression hose on, drinking coffee and blogging. I keep thinking it will get better but that hope seriously is swirling around the drain. Today is a new day so if you can, go out and make it a good one. I am going to try!!

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Hospital Again

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Hello everyone! I sincerely hope that you have all had a great week! Our weather here in Ohio has been beautiful! Sadly, I did not get to enjoy it.

I had to prep for a colonoscopy which meant that I was tied to the toilet for the weekend. Yay me! I am glad that I had it though. It was on Monday morning I had it. I knew something was different when I woke up and discovered it took a lot longer than normal. I was also hurting a little. I have had lots of these since 2001 so I know the drill.

Anyway, I found that they had removed three small 2 mm polyps and one big 3 cm polyp. That big one was the worry. They have all been sent for biopsy and I find the results on Monday. Ok, whew!! Made it!!

Then, on Monday evening I began to hurt in the region of the big polyp removal. I went to sleep eventually but woke with more pain. I kept pretending to myself ( something I am quite good at) that it would go away. Instead, it got worse until finally I called the doctor at 4:30 pm. He told me to go to the ER and have a ct scan. Easy enough, right? Wrong!

I got there at 5:30 pm (driving myself, don’t ask). After triage and IV port in, bloodwork was sent off and they finally got a room for me. I went back and got dressed in hospital garb and waited. I saw the doctor around 8 pm and he ordered morphine for pain and zofran for nausea. Now I was scrambling texting trying to find a ride for later when I left. Remember, I drove myself ( again, don’t ask).

Finally I got my ct scan. The doctor returned and said my lymph nodes were inflamed around the area the polyp was removed. Great! The good news was my colon wasn’t perforated!! Ok, lymph nodes, sounds like lupus is acting up to me but what do I know?

I was then told I was being admitted. What!? Oh just great! So, now I am texting saying I am not needing a ride after all. Around 1 am I am taken to a room and after another hour of admission process I am finally able to rest a little bit. I slept for an hour before the lab came for blood again. Next was the tech for vitals. The nurse was next with meds. So, no sleep.

I must have seen seven different doctors on Wednesday morning. Finally one came in and said I had “alongmedicalnameicantrecall” syndrome that a few people get after a colonoscopy. Figures. This was the first time I ever had anything like this!

I was told if I could eat lunch, I could go home. Yippee!!! Well, after lunch, another doctor came in and said I would stay one more night just to be safe. Oh no!!! After she consulted with the other doctor, it was decided it was up to me! I dressed quickly and asked for my paperwork. Ah! The sweet smell of success!! I was breaking out!! Then, oops!!!!

They asked how I was getting home. Thankfully I had not had pain meds that day so I told them I was driving myself. It almost was an issue but in the end, they walked me all the way to my car and I was out of there!!!

I stopped and got my meds on the way home them got home. Took my meds and sat in my recliner with the intent of watching a few shows that were on the dvr. The joke was on me! Once I sat back my kitty jumped into my lap and I woke up at 8 this morning! Now, that’s not so bad but I went into the bedroom and promptly fell back to sleep. I finally woke up at 3 pm! I guess I was sleepy!!!

So, I must apologize for being MIA but it wasn’t intended. To beat it all, the weather today is cold rain!! All those beautiful days and I was out. Crap. Oh well, at least I am home now!

Please dear friends I would like to ask for prayers that my biopsy comes back ok. I am a little worried. I am not going to obsess but it is there until they give the all clear.

Hopefully I will steer clear of hospitals for a long time now. Well, one can hope anyway! Hope you are all enjoying spring wherever you live! ~Jen

Call Me Mrs. Rip Van Winkle

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Call me ms van winkle
written on Nov. 7 th, 2012

Ok. I admit it. I have slept for about 38 hours. I missed the whole Election Day dramas. I do not even know who won. I will find out but wow!! You see, my cable was stopped so I have no tv, phone or Internet right now. It’s not looking good for the future either. I think I was overly optimistic about how far I could stretch a buck. Oh well, this will be ok. I could make this into a no tv thing for a year and blog about it. Yeah, now I have a plan!! He he he.

So I will be writing my blog on my phone and whenever I am in a wifi zone, I will upload it. No worries, the blog will go on!!

I am motivated to get this place in shape for winter. I have moved furniture and such but finally have a plan in mind that I think will work. I just need to attack this plan one thing at a time. Overdoing it causes days of sleep, as shown by the last day and a half! All I did was walk to the library to use their wifi. Ok, so it is 3/4 mile round trip. I get it. Lupus wasn’t happy. Well pooh on you lupus! I will continue to live my life no matter what you do!! I needed to sleep anyway. Lol.

Seriously though, I will miss my few shows I watched. I always dvr’d shows and when I had a chance I would watch them. There are only a few I really enjoyed. I can deal with it. Plus, I can focus on more spiritual things too!! This gives me more time for studying the bible and adjusting my life to be a better Christian! See, focus on positives!!

So, in this hiatus from electronic gadgets, I will still be posting. Just please bear with me as I try to adjust and remain focused on the positives of my life!! Thanks!!

Dear Mr. Sandman

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February 11,2012

RE: Sleep Patterns

Dear Mr. Sandman,

Look, I understand that you cannot be there for me all the time, but some of the time would be super! I mean, you go away for a few days then Wham! you come back for a few days. This can make our relationship very rocky in my opinion. 

I just wish you could come on a regular schedule, like every night, so I can get a routine going. I mean, I think our relationship is going along well and then you surprise me by not coming back one night. Then, because I am sooo tired, I cannot sleep. These surprises are not good for us.

After your absence, you then proceed to overstay your welcome and basically I cannot get out of bed. I get up and try but you pull me back. This is not a healthy relationship at all.

Please do me and you a favor. Could you please just get more regular? I know the wolf throws you out at times, but you can fight him if you want to. Please consider changing, for us, our relationship and the family. I appreciate your consideration of this matter.

Yours,

Jen

Fatigue

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Fatigue is defined as the following:

fa·tigue

[fuh-teeg]  Show IPA noun, adjective, verb,-tigued, -ti·guing.

noun

1.

weariness from bodily or mental exertion.
2.

a cause of weariness; slow ordeal; exertion: the fatigue ofdriving for many hours.
3.

Physiology . temporary diminution of the irritability orfunctioning of organs, tissues, or cells after excessiveexertion or stimulation.
(from Dictionary.com)
This is the classic definition of fatigue. For those of us who have autoimmune diseases like lupus, fatigue carries another definition. Here is my attempt to describe OUR fatigue.
OUR FATIGUE
Many autoimmune patients experience a form of fatigue in the course of their disease process. It is quite different from the everyday fatigue most “normal” people experience from time to time. This fatigue can engulf you and hold you hostage from daily living. Yes, I know, that is a bit dramatic but truly, it is hard to put into words how we feel.
My fatigue is different from yours. I have days where I get out of bed (Yay me!) and go to the bathroom, only to get back into bed because I cannot do anything more. Yes, this is the real fatigue. It does not mean that I slept too long. I hate hearing that. People seem to think that our fatigue is like theirs and that if we were not so lazy sleeping so much we would be better. WRONG!!!!! 
If you seriously think I WANT to be in bed so much then you need to rethink your attitude. Believe me, I have mourned the loss of my abilities and I am trying to come out the other side. It can be very difficult when those around me seem to think I am making it up. I WANT to get up and participate in life!!! I WANT my old life back!!!
The fatigue I feel involves the overwhelming and complete exhaustion of my body. It is like I have run several marathons and cannot take another step. When it hits me, I literally HAVE to go to bed. No kidding. I cannot push through it. I cannot pass go or collect two hundred dollars. I HAVE to go to bed and sleep. 
I have been known to sleep for a lot of hours! I can wake up and get a drink of something then back to bed I go to sleep another several hours. What happens if I push through it you say? Well, eventually, sooner than later, I will be forced into sleeping. I will fall asleep in my chair or wherever I am. My body literally will shut me down. When that happens, it takes me longer to come out on the other side. It is important for me to listen to my body and its cues so I can avoid having this happen. 
In saying this I am not looking for pity. I am looking for empathy and understanding. I mean, I am not lazy! I have worked hard all my life and have had to mourn the losses of all the things I used to do. I applaud the things I can do and feel blessed for still being alive and kicking! So, if you see me out and about and happy, then know it is a good day for me and be happy! If you do not hear from me for some time, feel free to call me to check on what is happening. One phone call can make the difference in my mental status, just knowing someone cares enough to see how I am.
So, in conclusion, my fatigue is not a normal fatigue. It is all encompassing, head to toe fatigue that can put me in bed for days. Do not judge me and my fatigue. Do not belittle me or tell me to suck it up and get up. Just be supportive and care and that can make my whole day! It really is not much, don’t you think? 

Overdone again, oops!

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Today had an auspicious start for me. If you have lupus you will understand this. I could not get out of bed. I made it to the bathroom and barely made it back to bed. Sounds ridiculous? It is my reality some days and this was one of them. I ended up sleeping until noon. I made myself get up and into my chair before my granddaughter got here. I don’t want the grandkids to worry about their meemaw so I pasted on my smiling face and pretended I was fine. After she left, I basically collapsed into my chair and have been here ever since. Yes, I get up to do some things but I tell you, this fatigue is for the birds. Have you ever been walking in sand and find you struggle with energy? Imagine that you are on a beautiful beach and in order to walk, you have to sink in a few inches into the sand and then you can walk. Well, that would be easy compared to how I feel today.

I knew I might have the rebound effect from the busy week I had last week. I know the signs, I had them all, and yet I push it out of my mind thinking that this time it will not happen. WRONG. It has happened and while I can pretend for a short time, the reality is that we did not get to the camper tonight (as planned) and instead we are home and while hubs sleeps, I am awake, in part due to the sleeping earlier in the day and in part due to the pain and other associated issues that come when I over do it.

So, this is my venting for today. I know there are those who think I should not discuss the incidentals of my life and how the disease affects me. However, I find it helps me to pour it out on here and then I can relax more and go about the business of life. If that offends some people, then you do not have to read it. For me, it releases the stress and brings a sort of peace. For that, I am grateful.