Today I discovered something about other people. To begin with, let me say that those of us here who have lupus have met this type of person many times over. It truly does not matter how many times we hear this from people, it still rankles when, either deliberately or unknowingly, people say things that hurt us. To illustrate,
I have lupus, am in a flare, and also have had the flu for over a week now as well.You know, fever, chills, coughing, sneezing, aching, that type of flu. Yeah, it sucks to be me right now. Now for the comment that galls me… another person I know is getting the flu now, same one I have been fighting, and says this to me, “I am not going to obsess or worry about it but I will go on with my day to day regardless of it”.
Yep, that was said to me yet again today. The implication of such a statement is that, if I would quit thinking about lupus, the flu, or whatever may be afflicting me, anad just move forward in the day to day realm of my life, I would be able to overcome it. Oh yeah? Well, here is my rant about this topic… the day that you have walked in my shoes is the day you can tell me how to feel or act or do things.
I really get steamed when this happens. It happens when I least expect it and really makes my blood boil. Especially when this statement is made by those closest to me, in my family. While most “normal” people can push through the flu or other ailments, those of us with lupus will actually make ourselves sicker if we try that approach. You see, our bodies are under attack most days as it is, and to be able to accomplish anything, we need to rest, frequently, and listen to our body when it says for us to do no more. It is hard to justify that you need to rest or the flu is making you feel worse, or anything along that line. For those of us who do indeed listen to our bodies and rest, we tend to not be as sick later. It is a type of trade off, we have to rob from Peter to pay Paul.
I will make this a little easier for those who still may not understand. I would LOVE to just push through and have a real life in spite of having the flu or something like it. I do NOT like having to cop out of chores and the like because I am unwell and need to rest. I DO wish more people would realize the pain they inflict by just saying something as simple as “You can push through it and you will feel better”.
In a way, by saying that and not really hearing what we are telling you about rest, and NOT being able to push through, you are making us feel like we are useless human beings. Yes, that is how I feel whenever someone says that to me. I feel like they either do not care that is hurts me, or they still have not learned that lupus can take me down and out with little or no warning in a variety of ways. I hope they are not being mean spirited, but ignorance can still cause pain and hurt me emotionally.
In this scenario, please feel free to learn more so you are educated and understand the daily struggles involved. Ignorance causes pain but education causes empathy which we as patients need from those around us.
If you would liek to truly be of assistance to us, try a few of these suggestions:
Call us and just listen, it really does mean a lot and helps us to vent the negatives out and be more positive.
Drop by and check on us. Believe it or not, a little company can make the whole day brighter.
Ask if you can help with something. There are days when I cannot do the dishes, and it sure is nice if someone else does them. It does not have to be something like that, but just seeing if youc an help in some way means the world to us.
Send a card letting us know you are thinking of us. Yes, it really helps.
Maybe run an errand for us, like pick up a few groceries while you are out. Call first and ask us if we need anything. Amazing how this can change a day. Maybe go pick up our prescriptions even.
Most of all though, just letting us know you are there if we need you can make a bad day better! You would be surprised how little acts of kindness can make the world of difference!
Thanks for listening and I hope you all have pain free days and blessings surround you.
I have had the flu twice so far this season. It got me to thinking, is there a link or a reason why lupus patients get it worse than others? Why are we susceptible? Will I go into a flare (or prolong an existing one)? So, I dug around and found this article talking about lupus and the higher susceptability for the flu.
The reason I looked this up is that I am really struggling to be as “normal” as I can be but I feel so totally like c-rap. I almost went tot he ER the other day because of my swollen lymph nodes, fever, chills, facial blushing, severe head congestion, and swollen sinuses. Let me add to that, my joints and body aches and pains and the inability to sleep from all of the above, and you get the drift. Why didn’t I go you ask? To be quite honest, whenever I go to the ER, I feel like they look at me and think, “Why is she wasting out time?”. I mean, for some reason, the severity of my symptoms alone should raise a red flag, but it doesn’t.
For some reason, they do not think lupus has anything to do with me being sick so instead of going, I try to use home remedies instead. I used honey and lemon tea, my nebulizer, and have been taking benadryl and tylenol and on the off two hours, aspirin. It has helped some, but not a lot. So, I will continue to deal with this on my own. How sad is that?
To make it worse, some of my family (not my husband) have either said or implied that I should get over it because it is JUST A COLD. Wow! Really? I guess they got their medical degrees when I wasn’t looking.
It is for these reasons, I decided to check this out. The information is from a website called HULIQ. It is an interesting read. Enjoy and next time someone thinks you should get over it, I say get over them! Toodles!
Lupus Patients Are At Increased Risk Of Flu Infection
Patients with the autoimmune disease systemic lupus erythematosus (SLE) have an increased risk of infection, due to both disturbances in their immune responses and treatment with immunosuppressive drugs. Because morbidity and mortality related to influenza are increased in immunocompromised patients, it is recommended that patients with SLE get annual flu shots, which are safe and do not increase disease activity.
Both antibody and cell-mediated responses are involved in the immune response to influenza; in SLE, antibody responses to the vaccine are diminished, but it is not known if the same effect is seen in cell-mediated responses. A new study was the first to examine cell-mediated responses in SLE patients prior to and following influenza vaccination. The study was published in the August issue of Arthritis & Rheumatism.
Led by Albert Holvast, of the University of Groningen in The Netherlands, the study involved 54 patients with SLE and 54 healthy controls who received subunit flu vaccine, out of a total of 78 patients in each group. Patients were randomized 2:1 to receive a flu vaccine or serve as a nonvaccinated control. Patients and controls were followed up at 28 days and three to four months following vaccination, at which time blood was drawn.
Vaccination induces an influenza virus-specific immune response which is generally documented as the generation of antibodies specifically reacting with the virus. However, the main defense against the virus is exerted by specific immune cells, in particular CD4+ and CD8+ T-cells which are part of the immune response induced by vaccination. The level of this so-called cellular immune response has until now not been documented in patients with SLE, but is crucial for the effect of vaccination.
The results showed that cell-mediated responses (both CD4+ and CD8+ T-cells) to influenza were lower in SLE patients prior to vaccination. Following vaccination, cell-mediated responses remained lower in SLE patients than controls. CD4+ and CD8+ T-cell responses to staphylococcal enterotoxin B (SEB), which was used as a positive control, were normal in patients with SLE, indicating that their decreased cell-mediated response to the flu vaccine was not attributable to a decreased responsiveness of T cells in general. However, the use of the medications prednisone and/or azathioprine was associated with lower cell-mediated responses following vaccination.
Previous studies have shown that antibody production following flu vaccination is lower in SLE patients than in the general population and the current study confirmed these results. The authors evaluated the relationships between antibody and cell-mediated responses because CD4+ T-cell help is necessary for antibody responses. While they did not find a correlation between CD4+ T-cell and antibody responses using flow cytometry, they did find a modest correlation using ELISpot assay, a more sensitive technique. They also found that flu vaccination did not induce disease activity over three to four months.
Although the sample size in this study was not large, the authors conclude that the diminished cell-mediated immune and antibody responses to flu vaccination in SLE patients are representative of what occurs in daily practice. “Clinicians should be aware that this combined defect might increase the morbidity and mortality due to influenza virus infection, in particular in patients receiving prednisone and/or azathioprine,” they state, adding that evaluating clinical protection against influenza in SLE patients following vaccination may be warranted in order to assess whether more effective influenza vaccines or vaccination strategies are warranted.
Some days it doesn’t pay to get out of bed. I am vigilant about hand washing and covering my mouth and nose. I have even donned the “masked” look while in public. I try really hard NOT to get anything out there. Why? Because I am immunosuppressed and more prone to getting everything out there if I am not careful.
So much for planning and being careful. I woke up yesterday feeling totally horrible, with congestion and fever and chills and aching all over. If you add diarrhea to the mix you can see the misery. Some of these symptoms I have most days, but the fever and chills anad congestion are new and painful. My ears are involved too so my balance is off. Yup, just what I did not need!
So now instead of feeling just lupie, I am also fighting this flu thing. So, I have been in bed with a bug and feeling puny. Thank goodness I have my husband. He literally waited on me and took care of me. What a sweetie he is! He made me food to eat and I mean, he did it all!
I am feeling much improved today but still resting so I don’t get back to sicker again. You see, most people can push through illness and go on. For a lupus patient, we have to rest, really rest,so our bodies can heal. If we try to puch through it, we will pay a heavy price in getting even sicker than we started out. So now I feel better, but am resting in bed so I can heal better and be able to do more in a day or so.
A word to the wise here is this: Do not ask a lupus patient why she/he is in bed. We would much rather be out of bed, believe me. It is not a choice, nor is it a fatigue that is like you have. It is an overwhelming tiredness that permeates every part of our body and can be painful even. Some have called it toxic fatigue. It is not an excuse to lay in bed. It is a neccessity. Next time you think, “Oh there she is in bed again”., think again. We would love to be like you and able to jump out of bed and rush into a new day… we just can’t. Ok? Nuff said!
The title says it all! It has been one of those weeks. You know the kind, where things are either up or down and nothing in between. It has been a week of hills and valleys. On the positive side, I got to see most of my grands this last weekend and spend time with them. Time well spent indeed.
On the negative side, the flare is ongoing and added to that was a particularly nasty flu bug. My granddaughter had it first, gave it to her parents and then I got it. So, this last week was a blur of love, fun and then vomiting and diarrhea. Wow! I am ready for some middle ground this week.