Garden!!!

It's a beautiful June morning and I've been planting our garden. Planted several different kinds of tomatoes and some Walla Walla onions. I'll be trying to ad a few other things like peppers and zucchini later this weekend. It feels so good to be out in the garden again, getting my hands dirty and growing new things. It's been a few years since we've been able to plant a big garden and I've missed it.  I'm so pleased to be well enough to participate in the summer vegetable garden again.  I'be had to do things a bit differently this time around as being outdoors in the sun and or heat is dangerous for me. So I was out in the garden before 8:00am this morning with my sunscreen, long sleeves and big floppy hat. Our garden space is still in the shade at that time of morning and I had a good two hours before Senior Sol appeared and drove me indoors. I got a lot accomplished and it just felt good. 

Managing my activities has been a weird balancing act these days. I'm currently working full time as I cover for a co-worker who is out on medical leave and I am considering this a test run to see how I could potentially handle a full time job in the future. I'm finding that after working all week, the weekends have to be rationed as to not over fatigue myself. Last weekend we spent at the coast at a car show, where I kept to the shade, watched my diet, slathered myself in sunscreen and sun protective clothing. However, this weekend I'll be taking it easy and charging my batteries. I missed an event this morning but with the heat and sun, I would have gotten into trouble if I had not taken the day to rest up.

I'm in talks with my boss and we are both hopeful that I'll be able to work 4 full time days per week, which will make me a benefited employee.  It would be good to get my health insurance back and begin funding my retirement again.  The future looks pretty blooming good.

Stepping Back and Moving Forward

Winter is almost behind me and spring is just around the bend. Election season is in full swing and I find myself feeling anxious about things, and other peoples inappropriate actions or unkindnesses, that I have very little direct control over. So I have elected to step back a bit and focus on those things I can change.

I have been on social media for quite a long time and have recently stepped back from the drama. I have been working on getting my health in order, trying new medications, working on my home life to make it less stressful, trying to be more physically active. As much as Lupus will let me, anyhow. It's been about a month since signing off social media and I find that stepping back has allowed me to stay more positive in general and much more positive about my health. I do miss some of the friendly connections on social media however, I am now trying to make it to more gatherings, pot lucks, etc., and to do more in my immediate community. My health is getting better and I feel like I am able to connect in real life more. It's been good.  

I am trying to add more of what makes me happy into my daily life. I am working in my art studio more, making prints, and costumes that are a joy to create. I'm also planning events that gather my people together for some fun. Coming up later in March, I have rented the local Grange building and with the help of my Dear Husband have arranged to have a disco ball, and a sound system that will play my Disco playlist for about 4 hours. The 70's Disco Dance Party is going to happen! I'm pretty excited and even if we don't have a full house, I think it will be a hoot. If we do get a good turn out, we will be doing it again in a few months but with a different theme and music. 

Getting a handle on my health is feeling really good. Full time work is beginning to look inviting to me again, and I have been sending out inquiries recently. It feels like my life is moving forward again, moving forward with baby steps, but moving forward nonetheless. Set backs will happen and illness will be a part of who I am now, but I feel more hopeful than I have in a long time. I feel less like hiding and more like taking part in my whole life.  

So things are good. Life is good. I am good.  

You don't get to Judge

I was just reading in the news about the Florida woman, Barbara Dawson, who was taking from the hospital by law enforcement after being told there was nothing wrong with her and was discharged against her will. Apparently she said she wouldn't leave the hospital, she believed she was still ill. The police officer handcuffed her and took her from the hospital into the parking lot where she collapsed. She said "I can't breathe" and asked that they "please don't let me die".  She lay there for 18 minutes during which the hospital staff person and police officer told her there is nothing wrong with her. Then something changed, they realized there was something wrong and Ms. Dawson was quickly readmitted. She died 90 minutes later from a pulmonary embolism. It's so sad. My heart goes out to her family.

As a health care worker you may see people many different kinds of patients, some who are difficult, who you may suspect of certain behaviors, who you think may be a hypochondriac, who may have a different culture, who may be a drug addict, who may be poor, or who may be uneducated, or who just can't communicate their symptoms well. But here is the deal, you don't get to judge. We are human beings who have come to you for help. Even though it may be hard for you, you don't get to judge, you don't get to apply your personal biases, or philosophies, or religions, or prejudices. You don't get to judge.

Those of us on the receiving end of healthcare, we don't always have the words to describe what our bodies are doing, we only know that something is not right and most of the time we are scared. We have not studied medicine, we are not good at diagnosing ourselves. That's why we come to you and ask you to take care of us. To care for us.

Barbara Dawson was not taken care of, she was judged. 

Limited Choices, Scary Medications, and Other Nightmares

In the last 50 of 60 years, there has only been one new medication developed used for the treatment of Lupus. Most of the medications that are currently used to treat Lupus are actually medications that were developed for other illnesses. All medications that are used to treat Lupus only address symptoms. There are no medications that can correct Lupus or address the disease directly, not yet anyway.  

I'm just learning about the medications, so this information is not comprehensive, but here is a taste of what choices I have been faced with so far. The Plaquinel is a "tier one" drug, I think that is the first one that gets tossed at us, but cause the list of side effects and risks are not as scary as the "tier two" drugs. However, the list was scary enough for me.  I've been taking Plaquinel for a few months, but I have a slight allergy to the medication. I break out in hives all over my body if I try to take the full dose for very long.  My Rheumatologist has suggested moving to Imuran, a "tier two" medication, but it's just too scary for me to commit to at this time.  

The point of taking any of these drugs is to suppress the malfunctioning immune system.  When the medication works, the symptoms of Lupus are reduced and I can function with less daily pain and discomfort, I have energy enough to make it a full day at work, my skin lesions clear up and I feel fairly normal for weeks at a time. Feeling normal has not happen for about 2 years now, so I was pretty stoked when the Plaquinel caused a real improvement in my daily life. I was in tears when I called my Rheumatologist and he said I should try another medication, a "tier two" medication, one that is listed as a known carcinogen  one that has side effects listed that may cause sorosis of the liver, or leukemia, just to name a few of the really ugly ones.

After doing some research and asking a lot of questions, both of my Rheumatologist as well as MyLupusTeam.com forum, I came up with an idea. Although it's not normal, my Rheumatologist is letting me try Plaquinel at a lower dose to see if my body can find a happy balance between the drugs effectiveness and my body's allergic reaction. I'm thankful that my doctor is willing to try this and is interested to see if this works for me. I've only been doing this for a few weeks, so the jury is still out on this little adventure. 

So here I am, crossing my fingers, hoping that my body will respond well and I can hopefully get back to a mostly normal life.  

Below are some links to the side effects and risks of some of my personal options for treating my form of Lupus. Please proceed with caution, this information may give you nightmares. 

Plaquinel side effects and risks:

http://www.drugs.com/sfx/plaquenil-side-effects.html

Imuran side effects and risks:

http://www.drugs.com/sfx/imuran-side-effects.html

Bynlysta Infusions side effects and risks:

http://www.drugs.com/sfx/benlysta-side-effects.html

If you take a fall in a parking lot, and no one is there to see it, does it still hurt? Why, yes. Yes it does.

As I am learning about Lupus and how my body responds to, the disease, the medications, the trauma, the stress, and the every day events of life, I am asking myself a lot of questions. When a new symptom pops up I start looking back at my activities, diets, exposures, expenditures of the last two or three days looking for a trigger. Did this thing cause that reaction? Did that meal trigger this symptom? If this symptom started today, what did I do yesterday? As well as many other questions and guesses.

For example, last Thursday I took a fall in the parking lot where I work.  It wasn't that bad, I just slipped and landed in the flower bed. I didn't even get a bruise. But as the day went on, I became a bit sore, then a bit stiff. By the time I finished my work day and made my way home I was looking like an old woman, and on top of that I had an upset stomach, clamminess, faintness, and fatigue. It's the fatigue that clued me in.  Fatigue is one of the biggest challenges we face with Lupus. You just can't keep going like you did when you pulled all nighters in your 20's. It's not like you're tired, it's so much bigger than that. Its like you can't keep your eyes open, your body is weak, your muscles weak they are unable to lift your body from a chair, or carry a purse. It is such a helpless feeling, and it is really scary.  

It took me some time to look back at my day and go though the things I did and the things I ate, before I figured out that it was probably my graceless fall in the parking lot.  But then I start thinking, did the Lupus cause the fall, or did the fall cause the Lupus flare?  If the Lupus caused the fall then things get scarier, has the Lupus progressed to my nervous system?  Is that why I fell? It's the "which came first, the chicken or the egg?" question. I feel like a detective trying to solve a mystery but who finds herself thinking in circles. 

When these unexpected triggers happen, like my parking lot tumble, it's much more difficult to make plans. Planning my life, keeping my work commitments, engaging with my friends and loved ones seems to get harder and harder. I'm still hopeful that at some point soon I will find a balance with  work, medication, rest, limits, that I can live with.  Here's hoping.

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.