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May is Lupus Awareness Month

imageslupusI believe this is great information… but I feel like it’s cold and just touching the surface… Wanted to share anyways… I did not write this I just wanted to share as this Lupus kicks my unhappy azz everyday…..I still look forward to each day in hope that tomorrow will be better…As always I hang in there the best I know how…Also I have the organ threatening lupus ..Anyways I hope this can shed some light to a caregiver or a loved one or just anyone…

 

http://www.lupus.org/action/lupus-awareness-month-facts

Lupus Awareness Month Facts

Lupus Awareness Month is observed during May to increase public understanding of this cruel and mysterious disease that ravages different part of the body. Spread the word and share these facts on your Facebook and Twitter.

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May 1. Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

May 2. In lupus, something goes wrong with the immune system, the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that cause inflammation.

May 3. Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

May 4. Most often, lupus develops between ages 15 and 44.  However, between 10 and 20 percent of cases develop during childhood and these cases can evolve into serious health complications more rapidly.

May 5. African Americans, Hispanics/Latinos, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

May 6. Lupus is not contagious and cannot be “given” to another person.

May 7. To make a lupus diagnosis, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

May 8. Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

May 9. The malar, or “butterfly” rash on the face is present in an estimated one-third of people with lupus. This flat, reddish rash across the bridge of the nose and cheeks often is the only outward symptom of lupus (though other signs and symptoms might be present).

May 10. Though all pregnancies of women with lupus are considered “high risk”, advancing technology and a better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

May 11. Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain

May 12. Among people with lupus that affects the skin, poor mental health is common and has been found to be similar or worse than mental health among those with type 2 diabetes, recent heart attack, heart failure and high blood pressure.

May 13. People with lupus have two times the risk of developing cardiovascular disease than do people without lupus.

May 14. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.

May 15. An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.

May 16. Factors that may trigger a lupus flare include infections, ultraviolet light, stress, some medications, environment with some still unknown.

May 17. Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult.
Week 4

May 18. Based on a recent study, it takes an average of six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.

May 19. A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting an incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.

May 20. First degree relatives of people with lupus (parent, sibling or child) have six times the risk of developing the disease.

May 21. Sensitivity to ultraviolet light (present in both sunlight and artificial light) affects as many as two thirds of individuals with lupus, and may cause fever, debilitating fatigue, joint pain, rashes and other symptoms.

May 22. Of the 23 percent of people with lupus who experience severe lupus flares, all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days.

May 23. 40 percent of adults with lupus and as many as 66% of all children with lupus will develop kidney complications.

May 24. Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.

May 25. More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.

May 26. People with lupus usually are encouraged to engage in appropriate daily exercise to maintain muscle and bone strength, but they also need to balance exercise with rest.

May 27. On average, the annual cost of lupus, including expenses related to treatment and loss of productivity, exceed $20,000, and can increase to $63,000 if the kidneys are involved.

May 28. People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.

May 29.  About half of all people with lupus will experience a serious infection during the course of their disease.

May 30. As many as 60 percent of people with lupus will experience some type of memory problem, such as recalling names, dates and appointments or balancing a checkbook.

May 31. With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to having the same lifespan as people without lupus.  (I also have this one…)

Again I did not write this…

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Happy to be back…Illnesses suck hog ballz…..

Hey Everyone!!.. 🙂

I wanted to put a blog post up to let you all know that I’m soooo thankful for each and everyone  “my followers” 🙂 for still being here since my health problems went fucking crazy!!!!!..

I tried to read post and comment on ones that caught my eye while I was out of bed but since I was not out of bed very long let me just say I am sure that I missed so much… I wanted to show everyone  that I was still here and nothing was wrong when in fact that I could hardly stay at the computer long enough to pay bills…I was a mess… I’VE been dealing with my fibro/lupus flares,anxiety and severe pain along with the darkness of depression….yeah I was no good or use to anyone…I failed on those test my illnesses were stronger (this time) 😉

 

So with that said I noticed one day while looking around here that I had missed so many comments and it bothers me!… so as you can probably tell that I’m doing a bit better so I want to take the time and get back to these old comments that you all took the time out of your day to write to me I want to get back to you all  I feel in order to grow and continue that I have to do this first and again it is only fair and I want to read them as well…so every comment will have a reply…. I have seen blog post where people would ask questions in the comment section or even the blogger would ask questions to followers and to my surprise the blogger would never answer the comments that ones ask…I guess some are just like that? But that my friend is not me at all….the whole idea of getting feedback good or bad or a comment and interactions that is what i want and hope to get…

So off to my comment section now then eat a nice homemade dinner that all 3 of us helped with and go from there….

I do have yet another doctors appointment in Dallas tomorrow  maybe two of them if they can work me in…. One is pain management the other one is my Lupus and arthritis Dr ………..LET US HOPE FOR GOOD NEWS…I KNOW I SURE COULD USE SOME THESE DAYS….IT HAS BEEN ROUGH!!!…..But I shall fill you all in on the good and the bad…even if you do not want to hear it haha….

So any advice on ways that have help you work thru fibro/lupus flares and chronic pain? and lets not forget the damn anxiety it was so bad that I could not focus on one single task and seemed as if I was living on my Xanax with no luck at all… I mean it is to the point that I’m not living my life at all just going thru the emotions….what do you do in these times? oh I can not leave out depression that fucker…..

hope to hear back from everyone and again I will return soon as I get back into my routine by that i mean rest from doctors office and the damn drive……

How To Prepare A Trip To Dallas…The Best Way I Can!!!…

How to prepare a trip to Dallas… The best way I can!!!…

  • The good points…
  • It’s supposed to be nice
  • The drive is pretty
  • The glass / mirror buildings shine bright in the sun
  • Nighttime the buildings light up
  • The skyline

I will not be driving (best part)…

I will pick out my outfit tonight and have it ready to go and take my shower (who am I kidding) I will get my clothes ready in the morning and no you can not watch me shower 😉 …

No need to set any alarms since I am one that wakes at all different times during the night and usually up very early…

When I wake with coffee in hand I will sit there and enjoy it while I tell myself this trip is going to be fun… At this time I will take my Xanax as directed (if needed) along with my morning medications. I will remind myself again to breath and I’m blessed to have a wonderful man driving me to the big city of Dallas. He is a professional driver with a CDL he has been in a big truck since he was able to walk also he has been all around the USA in all types of weather so it’s not him I’m worried about at all…It’s the idiots out doing there so-called driving or what they think is driving (this in its self that drives my anxiety through the roof)!!! The ones that want you to hit them so they get paid hell all the signs heading to Dallas are “have you been in an accident or injured call us we will get you the money you so deserved…I’m not a sue happy person sure I know things happen but when it is just stupid on their part or just for the cash then NO!.. Accidents happen but it doesn’t mean we always have to sue the person. My man will see me get scared and his saying is ” worry when you see me worry” so I usually try that and it does work he just drives in his own grove and let the asswipes do what they do…

Rough Road Ahead
Rough Road Ahead

My appointment is at a not so bad time to be driving in Dallas (if such a time exist)

I will start getting ready get dressed I do have to do my make up sitting down since I can’t stand very long (but hey if that’s the worst part then A-OK)… I do have to do my hair and it’s past my waist almost below my but it’s natural curly but needs to be cut bad it’s not curly looking when it’s like this so most of the time I do it straight but either way to stand THAT LONG KILLS ME!!!…PAIN really sets in!!!..I will have to take breaks for sure…then the usual brush teeth blah, blah,blah… My make up is hard at times to do when my hands start to shake so that is always fun (I really don’t want to look like a clown) or do I… just depends on the mood I’m in 😉

We have at least a 65 mile one way trip ahead of us so we do make the best of it… I tell myself I can do this… just have faith…well I do have a lot of faith for sure but how my anxiety gets the best of me and one would think that I was the one driving after all.. so I’m blessed very blessed in many ways and not driving there is one great blessing…The fact too is that we have to do this trip every month so it is nothing new at all to me or us…most of my doctors are all located in Dallas so should be a piece of cake oh (cake sounds good about now) or pecan pie I will take both please… My anxiety has just been getting more frequent I think stress is playing a major factor in this either way I hate it…

So after make up on and yes sunscreen under it as well as all body parts exposed to the sun (all is covered) I even bring a jacket just in case… with lupus the doctor doesn’t even want my desk by the window.  My lupus is pretty advanced (we will talk about that and other health in another blog at a later time) I’m just trying to be more proactive about my health then I have in the past so I’m learning the hard way but at least I try my best at all that I do…

Well drinking water by now and going easy on it since we all know how bathrooms at gas stations can be YUCK!.. you know the kind where you don’t dare sit on the seat and you flush it with your foot ..yeah some are not the best. I could use a catheter at times but for the most part we do stop at the nicer ones if needed…

Before I leave I give dad his medication and tell him what time to take it and sit it on the bar for him and tell him I will call when his next medications are due and for him to call me for anything he needs.  I have been taking care of my dad for over 3 years since he got hurt I haven’t been home but one time since then and boy I do miss home(more on that later)…we have friends that will stop over while we are gone to check on him as well for us…

well I get all that is needed for my appointment and at this time I would grab my purse but you see we rescue dogs we work with a few agency’s that try to find forever homes for such wonderful dogs that would be put to sleep if we didn’t help (yes, more on that later) can’t wait to share with you the love they bring!!!!…but as I was saying about my purse well the one rescue dog chewed it up like it was candy and I don’t have another purse here but the look on her little face was priceless and all I could say is why oh WHY??? of all things this little one could have gotten into but NO it had to be that….my favorite purse…..

Dallas is nice as I pointed out above and then some but my town is here and my home is here out in the country I don’t miss the city life at all. I am looking forward to getting out of the house for a while and having private time with my guy since we don’t get any private time here at my dads home so we do enjoy the ride for the most part I just wish it was under better circumstances than going to the doctor’s office every month sometimes I have 2 doctors to see in one day there they do run me through the mill with blood work you name it they do it just to stay on top of everything and I am thankful to my wonderful doctors they all are great and caring..

I will do my best not to watch the idiots on the road and I will try to keep my cuss count down as well on this trip. I just want to try  and enjoy it the best I can and get there and back here safe. I do wish all drivers on the road a safe trip to and from where ever they may be going….

I just wanted to share what my day was going to be like…

Also do you get nervous during traffic and/ or doctors appointments?? … If so how do you handle it??…

anxiety how do you deal with it??…

what is your day like??…

OK …I will be posting more than I have in the past..as much as I can… A thank you to all my new followers… brings a smile to my face now chime in on here and speak your mind….

Until next time my friends smile you are all loved…

xoxo Suzette…

safety first buckle up
safety first
buckle up