I haven’t written about lupus, and the fact that I have it, in quite some time. It’s actually what this amazingly scintilating blog was intended to be about in the first place, but I find that talking about my family, kids, upcoming grand baby etc is much more exciting and uplifting. Today, however, I thought maybe it was time for a dose of reality. Lupus stinks first and foremost. May is Lupus aware ness month and if your facebook page is like mine you have gotten some information about lupus and the affects on one’s body. There are so many varied and different symptoms and issues that happen from person to person with lupus. For me it is pain, a lot in my joints, migraines, rashes, sores that show up if there is infection in my body, lots and lots of fatigue, depression, and sometimes even the desire to live like this for the next however many years of my life does not even seem appealing to me. Not that I would ever take my own life because believe me I in no way want to leave my family, my kids or life. But, living like this is sometimes not really living.
The other issue that is really annoying a lot of the time is the lack of understanding of this disease. Even in the medical field becuase it is so varied in how it affects people doctors don’t always understand, emergency rooms certainly don’t understand, which makes it difficult for family and friends to understand. Now, don’t get me wrong, my family is awesome. They work their hardest to understand what I go through on a daily basis, but until you have really lived in constant pain, day after day, had to worry about just going outside for fear of gettting sick or breaking out in a rash or both, never know when you will get sick…it’s really hard to know how to handle someone in your family with this illness.
Medications is another one of those dreaded but necessary evils of lupus. No matter how hard you try to stay off them, or limit them to only a few that are or seem totally needed, they can wreak havoc on your body, system and quality of life. For most lupies prednisone or steroids of some sort are an necessary evil. I have tried my hardest to only go on them if I am in desperate need. Like now, for instance. I have sores all over my face from some sort of infection and I reluctantly went on them to help heal. But once this dose is done I will not go back on them again until absolutely needed. Other meds include methotrexate, plaquinel, muscle relaxers, pain meds, blood pressure meds, anti arthritus meds, injections of medication for joint degeneration, gabapentin for nerve pain, anti depressants, and the list goes on. Now, granted we are not all on these same meds, some are on all, some are on only a few, but whatever a lupie is on can greatly affect their life. It’s a balancing act and I will admit to have gotten out of that balance and ending up in the hospital because I have not been watching carefully enough what I take and when. I have gotten so much better with the help of my kids and the help of just realizing it was time to get serious about medication care and control and scheduling. I want to be clear here however that people with Lupus are NOT drug addicts. And, a lot of the drug problems happen because doctors just don’t know enough about it, and one doc gives this drug that interacts with that one and it causes a big ole mess. Not that I haven’t felt like a drug addict at times, or wondered if I am better off not taking anything and just dealing with the pain…been there, tried it and guess what…the pain is unbearable…unlike any pain I have felt in my life.
There are certainly days when just getting out of bed, just taking a shower causes so much exhaustion, so much fatigue it is better to skip the shower in order to get other things done in the day. AT the same time there have been times, in the middle of the night that I have sat under the hot water in the shower to try to relieve some of the pain i feel and cannot manage.
So, why am I writing all this now? Maybe it’s because I am going to be a new grandma soon. Maybe it’s because I really feel it’s high time more people know and understand this illness and that it is one that so many people fight and those people are often looked at as hypochondriacs, and emotionally unstable. It’s real. It’s not a joke. So, if you know someone with lupus, give them a break, a helping hand, understanding, love, let them know you are on their side. And, if there are days they want to give up talk them through it. Because no matter what there are beautiful things in life that deserve to be enjoyed, and lived. Most of all they need encouragement that on those bad days tomorrow will come and hopefully tomorrow will be better.
And to all you lupies out there….carry on!!!!!