Lupus: Looking for answers

I have been attempting to read up on Lupus and learn as much as I can about this disease and how to live my life as healthy as I can.  Its a challenge to figure out on one's own.  Every person with Lupus has their very own version of Lupus, with their very own list of symptoms. Symptoms that change from day to day, hour to hour. In my exploration and blind grasping for answers, I found a resource or two.  
The one that I use almost daily is MyLupusTeam.com, this is an on-line forum for people with Lupus, parents, spouses and loved ones of people with Lupus. This forum has taken the role of "support group" for me as there are no support groups for Lupus in our area yet.  I have been on the sight almost daily to ask questions about medical care, read a few kind words from another person who has lived with the same challenges, to ask about medications, and share my experiences with others who really know and can sympathize with our every day challenges.  It's been a real help to me and has helped me face Lupus with better information, better results, and a better attitude.  What I see that gives me real hope is the fact that I see people on this site who have been living with this for 12 years or more, who have found a way to live their lives, and have a positive attitude, and be as well as they can in spite of their disease.  There is hope there. There are several of these folks who I admire very much and have learned so much from, I owe them a debt of thanks already and I've only been on the site for about a month. I find that sharing with them allows me to not be quite so depressed when the Lupus hits, and a bit less whiny when I'm in pain. I've learned that there comes a time when you are uncomfortable so often that your loved ones get kind of sick of hearing about it all the time. I get that, I get sick of it too.  I have learned that people really care about the Lupus patient, but when they ask "how are you?" they really don't want to know how you really are. They just want a quick overview and to know that you're not headed to the hospital ER today. So I save those conversations for my close loved ones who I would normally share secrets with, I know that they will want to know the real details, and I share with MyLupusTeam.com folks because the can relate and give real advice about what works for them when they are in my shoes.  It's been very helpful.
The second resource that I found is a book, "Embracing The Wolf" by Joanna Baumer Permut.  While I did find some of the content helpful, I also found some of message a little difficult to apply to real life.  However, this book is really a story of one woman's life after being diagnosed with Lupus and how she, her husband and her young daughter, had to change their lives and goals to accommodate her disease. The thing that I love most a about the book is that she got counseling when things got really ugly and later her husband also got counseling.  I can see that loosing the strong, active, capable career woman that he married would have been a difficult adjustment.  The part that I took issue with is that this family lived in a world of money.  She was able to quit working, they had to sell the sail boat because she couldn't be out in the sun, she was able to afford weekly massages, going to lunch with her old work friends, have girl spa days, and volunteer when she was well enough.  That is a different financial world than most of us with Lupus live in.  While I think that's great that she was able to live a fulfilled life, that is because she was financially supported by a very high earner.  I think if she had had to keep that job to have medical coverage, if she was a single mom, if she was the high earner, or if she wasn't married, this would have had a very different ending.  The book is a little dated, but like I said earlier, there is some good nuggets in there.  Lupus impacts an estimated 1.5 million americans today, the number of African American women are 3 times as likely to have Lupus. There are a lot of us Lupies out there, we are not all in as fortunate a position as the author.  For some of us, it's a bigger challenge to stay healthy and still pay bills.  
I have also started reading another book about Lupus, it's main focus is young women, teens and college age women who are diagnosed at a younger age.  My first impression, is that it uses too many exclamation points! but I have not been reading it long. I'll share more on this book later.  Thank you for your attention. Be well.
Here is the link to MyLupusTeam.com:  http://www.mylupusteam.com









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Fernando

I've been off line for a while and a lot has happened. Firstly, someone broke in to our house and stole my laptop, among other things. Which has kept me from a comfortable way to post entries here.  So, now my computer has been replaced and I'm back to talk some more about my Lupus adventures, for those of you who are interested.  

In July, after camping at a festival that my husband and I volunteer at, I came down with a rather bazaar affliction.  My right parotid gland swelled to the size of a golf ball.  It wasn't painful, but just uncomfortable.  Because it was weird, I freaked out a little and went through the Urgent Care, Antibiotics, Primary Care, CT Scan, Chest X-Ray, Rheumatologist  ENT, Biopsy, Second Biopsy, Surgery Suggestion, and the "Gee I don't Know", merry-go-round. It has yet to be determined if it is Lupus related or some other random thing. 

The swollen gland, I have named Fernando. Fernando sounds much less scary than "potentially cancerous" or "abnormal growth". So Fernando and I have been seeing quite a lot of each other. We've been constant companions since July and to be honest, I think its time we start seeing other people. Fernando is a clingy pain in the neck. He causes a lot of drama and seems to make everyone dislike him. No one has any idea why this is happening or what it is exactly. The ENT was very concerned that my biopsy came back with a extremely high inflammation levels. But I have Lupus, that's pretty much how I roll these days, I am in constant inflammation. However, either the ENT doesn't get Lupus, or he just really doesn't like Fernando. He wanted to cut Fernando from my life for ever. It seemed pretty drastic, especially because there is a chance it could leave the right side of my face paralyzed for life. Not to mention, the chance of cascading Lupus reactions to both the anesthetic as well as the surgical trauma, which can be life threatening at worst, and long and painful at best. I have told the ENT I'm not ready for surgery until there is something more definitive to go on. I don't think he's happy about that. I have agreed to come back for an ultra sound in 6 months to be sure Fernando has not morphed into something more scary.  

In the meantime, I've been seeing less and less of Fernando, he is half the lump he was.

Me and Fernando

I have included my diary entries for your amusement. Enjoy.

July 12th

Have a swollen gland on my neck, couldn’t seem my regular doctor so I went to Urgent Care.  Antibiotics, they don’t think its Lupus related.

August 4th

My lymph gland is still enlarged. In fact, it is so large and persistent, I have named him Fernando. Fernando and I have had a relationship for some time now. However, he is clingy, and a bit of a pain. I think we should see other people.

August 6th

So after introducing Fernando to my Doctor, She wanted him to meet the phlebotomist, the X-ray tech and the CT operator. Nobody likes him. They asked a lot of questions and have determined that his sign is NOT Cancer. I'm more into Scorpios anyway. Looks like he needs to meet a few others, like an ENT who specializes in Fernandos. He's gonna be around for a bit longer, but it looks like a break up is inevitable.

August 26th

Fernando and I met with a couples counselor (ENT) yesterday, we have determined Fernando is not who we thought. He is not a lymph gland. ENT think’s he is a cyst in the bottom of a salivary gland. To determine Fernando's true nature we will be exploring his emotional depths via a needle biopsy in the near future. While I'm hoping that Fernando and I can come to terms with our partnership, I feel a break up is eminent.

September 4th

At the ENT. Fernando is about to have a poke with something pointy. He's a little nervous.

September 11th.

The Fernando Update! Well, the results are back and Fernando is not deadly, not potentially fatal, not even suspicious. He's apparently a chronic inflammation, which is really just a chronic pain in the neck. I can live with that. I'm seeing less and less of him as this relationship comes to a close. I'll get the final verdict from the ENT soon, but it sounds like he's just a Lupus thing, or a Lupus like thing. Poor Fernando is fading away, like most superficial relationships. I'm going to let him go and try to find happiness with someone else.

September 22nd

More Fernando Drama. ENT Thinks Fernando is potentially dangerous.

Fernando and I have a date at Rogue Regional Hospital this afternoon for a second biopsy. Going to try and see what he's made of.

October 6th

The second pathology report is back and Fernando really is a benign being as far as anyone can tell. He is fading everyday and I have decided to let him be for now and check in with him in 6 months to see if he has changed his ways. Good news. But I'm not trusting him, I'm making sure he's going to behave in the future. I'm gonna check up on him...the trouble maker! I'm hopeful that Fernando is on his way out of my life for good.