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
Well my friends, I think we might actually have lift off for spring! A few times it looked this way only tone buried under snow again. Thankfully, I think the true spring has taken hold so off we go! I love this time of year despite my body’s trials. This time of year brings a sense of renewal to body and soul. The thoughts of beautiful things, such as flowers and babies fills my mind.
I have been in pain, yes, but somehow the beautiful weather dulls it a bit. Psychological, yes, most likely, but it feels great to be alive in spring!
I am planning my garden and getting excited to be growing heirloom plants that are more nutritional than the GMO substitutes available at most stores. I am happy to start my flowers too. I am also planning an herbal garden so I can use fresh herbs in foods. Yes, I love spring!!
Our lupus walk is approaching as well. Still have no team members and I am the only donater so far but I refuse to let it worry me. I have made it to this side of winter and today, nothing will slow me down!! Things will improve, I am sure!
I have also been working on organizing the house. I need to get things in order so that I can relax and enjoy the warmth of spring and summer that is quickly approaching! Funny thing, I never enjoyed spring cleaning before but after this particularly hard winter I find myself enjoying it!!
So off I go to face my day! I hope each of you will slow down and appreciate all Gods Works during this season of warm renewal of life!! I will be!!
Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!
As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!
Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.
I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too! Thanks to you all for your comments, encouragement and personal stories! ~Jen
Today began as any other. I got up and drank some coffee, sat down and took my pills. Next thing I know, I hear someone knocking on my door. By the time I come around from the fog, they had left. It was my mom. So I called her and then sat down again. Once again, the next thing I know, someone is knocking on my door again. I had fallen back to sleep once again! I answered the door to find my husband there. I am not sure he ever said why he came down here but his car would not start so he couldn’t leave. Long story short, his car is still here but he left in the pouring rain to walk back to his home. By the time I was fully awake, he had left.
Now I ate something and then sat back down. Seriously, I fell asleep again. I also discovered my lymph nodes swollen so my thought is that I am flaring up in my flare again and sleep is what is happening. It happens when I begin to flare up worse than “normal”.
So now here I sit, at 4 in the morning, wide awake and watching my programs I dvr’d. Hope I can get some rest soon.
So, how was your day? I hope everyone is doing well. Thanks for letting me vent a bit.
Fall and Spring are two of my favorite times of year. The weather is in the optimum range during the day with a nip of chill at night. In Fall, the leaves are changing into brilliant colors that capture images in my mind. In Spring, the new leaves and stirrings of life after winter give me hope. It is a cycle. I am fortunate enough to live in a place that has four seasons (most of the time).
While I love this time of year, it does not love me. You see, with lupus and fibro and on and on, the weather changes actually can create problems int he form of pain and swelling and such. Add to that the pressures of the barometer and well, you can see it is not especially a comfortable time for those of us with lupus.
So I have been under the weather, so to speak, for a bit now. I have had pneumonia and a particularly bad flare. I am still recovering from them. I find I will be wide awake one minute then sound asleep a second later only to wake up and find that I have slept for a few hours. In other words, my body has taken over. If you are a lupie, you may have experienced this phenomenon as well. It is called “toxic fatigue”.
To help you picture how it feels to one who has it, think about how you feel as you wake up. Most feel refreshed, and ready to face the day ahead of them. If you have toxic fatigue, you literally are aware of being semi-awake but find it terribly hard to pull out of the fog that has you surrounded and is calling you back to sleep. You literally fight to wake up and get started on your day. Sounds kinda scary doesn’t it? Yet, that is how I have been for a few weeks now. It is indeed scary. I mean, what if I cannot wake up? I live alone so only my cat would know it. Is that maudlin thinking? Yes it is, but oh so true as well.
Have any of you experienced this toxic fatigue? How would you describe it? Please share your experiences! Thanks for reading!
- Lupus fatigue and catching a cat… nap (lupusadventurebetweenthelines.wordpress.com)
This is a moan, venting about the last few days. If you want to read it, fine. If not, fine. I just needed to get it off my chest. Thanks!
If you have ever been on prednisone, you wil know what am I talking about here. When I am on prednisone, I find myself suffering insomnia and running around cleaning and doing things. That is what prednisone does to me. Usually that is.
For some reason I have slept the last two days away, despite the prednisone. I found out why today. It seems that I have developed this tightness in my chest and ear ache and congestion along with a cough. Well I it is par for the course it seems. So, now I am sleeping even through the prednisone and feel like I can hardly move and walk or anything. That heavy feeling in my arms and legs and feeling like a huge weight is on me.
Thanks for letting me moan. Just sick and tired of being sick and tired.
It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.
As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.
My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!
Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.
I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.
So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.
I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
Got this from a great board for support. It is from the UK Lupus support board on myspace. Awesome read!
“Toxic Fatigue of Lupus”
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
The toxic fatigue of lupus also forces you to make major decisions. Will you make yourself a cup of tea, which means dunking that heavy teabag, or settle for a glass of water – and how many ice cubes can you use without making the glass too heavy?
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.
Another good read about fatigue
Lupus: A Patient Care Guide for Nurses and Other Health Professionals
Patient Information Sheet #2, Preventing Fatigue Due to Lupus
Fatigue is a very common complaint of all people with systemic lupus erythematosus (SLE), even when no other symptoms of active disease are present. The fatigue of lupus isn’t just being tired. You may feel an extreme fatigue that interferes with many aspects of your daily life. You may find that you are unable to participate in your normal pattern of daily activities, such as working, caring for your family and home, or participating in social activities. The exact cause of this fatigue is not known. But in some patients, it is related to fibromyalgia, which is a common, chronic disorder characterized by widespread fatigue and muscle pain, as well as multiple tender points.
Your doctor and nurse will probably ask you about your lifestyle and patterns of daily living and activity. They will also evaluate your overall fitness, health, nutrition, and ability to handle stress. Your doctor or nurse will then be able to advise you about how your fatigue can be reduced. It is important to remember that getting enough rest, maintaining physical fitness, and keeping stress under control are absolutely necessary for anyone with lupus.
Changes in your lifestyle and patterns of daily living and activity may not be easy to accept. In addition, the changes necessary for you to cope with your disease today may be different from the changes you may have to make later. A positive attitude and a well-thought-out, but flexible, plan of action will increase the chances that you can make these changes successfully.
Caring for Yourself
- Get enough sleep. You may be able to get by on 8 hours a night, or you may need more.
- Plan for additional rest periods throughout the day, as needed. Do not exhaust yourself.
- Getting enough rest does not mean no activity at all. A welldesigned exercise program is important to maintaining strength, endurance, and overall fitness.
- Every week, make a simple plan of your work and activities. The plan can help you organize the events of your life and ensure that you have a good balance of rest and activity.
- Each day, review your plan and decide if you are physically up to the activities for that day. Be flexible; if you don’t have the strength to do an activity today, do it another time.
- Don’t try to complete a large task or project all at one time; divide it into several steps.
- Eat a well-balanced diet.
- Dealing with stressful issues and problems takes a lot of energy. If you feel stressed out, talk with your doctor or nurse. They may be able to provide you with help for your problem or direct you to someone else who can.
English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)
Coffee is a unique thing to each person. When I was younger, it would wind me up and send me out to face the world with a bundle of energy. It was my energy! As time has progressed along with my age, I have found that my reactions to coffee have changed as well.
Coffee now is not the energy maker it was in my youth. I have found it to be the opposite now. I can drink a pot of coffee and go to bed and sleep. I mean, sleep really well. It seems that as my body changed with age, I have developed to the point that stimulants are no longer stimulants to me, they act as opposites now. Crazy, huh?
Conversely, when I take a narcotic pain medication, it reacts like a stimulant to me. I become energetic once the pain subsides. I am not sure how or when it happened, or even why, but I accept it as just being my unique self with strange body reactions. To think it all started with that first cup of coffee…