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. 

Is my body just getting even from nastiness that I have been sending it for most of my life? That is the question.

I've had a bit of a revelation recently. I've noticed that I think, cruel, demeaning, belittling, nasty thoughts at my own body, for not looking the way I think it should or behaving the way I'd like. I know many of us do this to a certain extent, and I stood back for a moment to really ask myself “Why do I do this?” So often we look at ourselves in the mirror and see all the different things we have come to believe are wrong with ourselves. Seeing only the blemish. I think it's for a lot of reasons. I could blame it on the media, which of course is part of it. We look at the high gloss, overly photoshopped images of 15 year old girls, and now boys, that are made up to look sexy, thin, wrinkle free, and the "ideal" that the rest of us are supposed to aspire to be. I could blame it on the fashion industry that makes clothing in cuts and styles that only fit a few body types and make the rest of us try and fit our "not off-the-rack" bodies into clothing that was meant for only 15% of the population, but not my body. I could blame it on the expectations of partners, or friends, who look at our non-augmented, wholesome, selves and judge us against the latest Hollywood party girl/boy. We all fall for it to a point. But here is the thing. I hear some of the most hateful, degrading, disrespectful words coming out of our own mouths, directed at our own bodies. People who would never say anything that ugly to another person are directing those foul words, ideas, and feelings to the body that cradles their unique essence, their mind, soul, and spirit. That body is the holy vessel of our very being. Many of us do this in front of our family, our friends, our children, and our lover. What are we teaching them when they hear those words coming from our own lips? How will they see you, treat you, judge you, if you give them this warped filter in which to see you though? How will they talk to their own bodies, their own friends, their own children?

As I learn about Lupus and how it turns the body's normal healthy immune system into a weapon it then uses on itself. The immune system can actually try to kill it’s own body. The constant reminder of this dysfunctional relationship between the body and its natural-defense-mechanism-gone-haywire has started me thinking about my own relationship with my body. When I'm sitting in the depths of Lupus symptoms and ask the inevitable question “Why me?" Well, let's just say that I'm the kind of person who wants an answer. Even if I have to make one up. Perhaps there isn't one. But then I wonder, is the answer, that my body just getting even from the negativity, self-hate, and nastiness that I have been sending it for most of my life? Is it finally fed up with the constant badgering? Is my body just getting even?

Lupus makes you take care of yourself, it makes you begin to be kind to you body. Giving it the rest it needs, feeding it the proper diet, giving it the medication and supplements it requires, slathering it with the sunscreen and UV protection that is necessary. The disrespect to you’ve given your body in the past is no longer allowed; it’s not even an option. You must care for it in a new way to stay healthy or if not completely healthy at least mostly functional. I'm learning to love and care my body in a way that I don’t think I every have. Maybe I'm finally getting the message.

I was in a shop recently and tried on something that was really cute, but didn't fit my body very well. I came out of the dressing room and said that it didn't work for me. The lady in the shop chatted while I was there browsing and I mentioned that I wouldn't buy it because it was a bit too small and I didn't want to make myself feel bad about body. I said I would just love my body and in the meantime, I'd wait for something that fit better to come along. She said that she was so glad I said that, and that she hears most women who come into her shop say terrible things about themselves. She thought it was refreshing to have some one be kind to herself. How sad it is that self-loathing has become normal and self-love has become rare. I’m not talking about the narcissistic, “I’m better than everyone else” self-love. That’s another topic all together. I’m talking about the private relationship between me and my own body. We need to stop talking badly about our bodies when we are in the dressing room trying on clothes that were not made to fit us. Stop comparing ourselves to unattainable images or fitting into unattainable sizes. When the jeans don't fit, it's not our bodies that are wrong; it's the jeans that are wrong for our bodies.

Perhaps I'm getting a little "Hippy Woo Woo", as our family calls it, but I think we need a shift in perspective. I think we need to get a new inner mirror and begin to see the magnificent bodies that care for our spirits, fight for our health, can do amazing feats, protects our essence, allows us to feel deep emotions, and has such great potential. When we look in this mirror we can start seeing the good things our bodies are and the good things they do for us. We can begin to appreciate the bodily things we take for granted. Let’s send our bodies love and stop sending the hate. When our bodies are healthy and active, they are performing miracles every day. When each system within our body is functioning in conjunction with itself, it is truly creating miracles every day. And let me tell you, when it's out of whack, it's a big deal. So, I'm going to be sending my body love. Lots and lots of love. I'm speaking kind messages, thinking positive thoughts, sending loving encouragement and paying attention when my body sends me a message. I'm going to see how that works, because all that hate? It hasn't been working too well for me. I’m going to love my body. I’m going to see how that works.

To Maurissa Tancharoen and Felicia Day. Thank you both for all the awesome.

I'm on Twitter and I follow some of my friends and a handful of famous people whom I admire. Two of which are Maurissa Tancharoen and Felicia Day.  They are both strong women who are doing new and wonderful things in TV, Gaming, and the InterWebs.  I think they are both awesome females and now I feel they are even more awesome.  Maurissa Tancharoen has Lupus, and she is still leading a very active and powerful life! What a great example she sets for us.  You can do amazing things and still live a vibrant life while having Lupus.  This means a lot to me, and gives me hope.  Not only that but she is getting the word out about Lupus and raising awareness. How she has the time and energy for that, I have no idea but I am thankful, nonetheless.  Felicia Day is also strong and powerful female. Felicia Day may not have Lupus, but she supports her friend Maruissa who does.  She does it beautifully and in a big way. Felicia Day and Geek & Sundry are hosting a charity event to raise money for Lupus Foundation of America (Lupus.org), in honor of her friend, Maurissa Tancharoen, and to the benefit of the rest of us Lupies. If you are interested in finding out more about Lupus, the event, or how you can help, go to the website below and check out the event.

http://geekandsundry.com/view/geek-sundrys-twitch-channel-launches-march-3rd

To Maurissa Tancharoen and Felicia Day.

Thank you both for all the awesome.

Sincerely,

Tamra

A Lupie

The Rollercoaster and other stuff

In the career I now have, I see people healing from injuries, getting over or descending into disease or even just old age.  I see people who struggle with their identity when physical limitations change who they think they are, and I see that in myself as well. I now have some limitations that I'm learning about, changes I've had to make in my life to accommodate the things I need to do to stay as healthy as I can. 

I had "the penny drop" the other day when watching a person try to come to terms with their new limitations. In my situation, having Lupus, life is a lot like a rollercoaster ride; there are ups and downs, twists and turns, and a few scary parts. Sometimes it makes us exhilarated and sometimes makes us feel a little sick.  However, if we are brave enough, we can let go and put our hands in the air, let out a whoop, and enjoy the ride when we can.  I had a small attitude adjustment at that moment and started taking more joy in things, or enjoying the ride a bit more.  

So when I have to stay out of the sun, I have a crazy striped and polka dot umbrella with ruffles that I will be using for a parasol.  I'm going to wear cat ears once in a while, because it's silly and makes people smile.  I go swimming in an indoor pool to get exercise where I get to watch the kids play in the pool. When I can't go out in the sun, I sit in the window and let the sunlight warm me that way. My Dear Husband and I have been going out in the evenings together to avoid the sun and still get out of the house. I know these seem like small things, but I'm on the look out for more of my enjoyable Rollercoaster moments.  

Today, I'm going to get my hair cut, because it will make me feel pampered and I'll get the latest gossip from my hairdresser. 

*She puts her hands up and says Whoop!*

Here a few links that explains a little bit about Lupus and living with it.

http://gerberink.hubpages.com/hub/Lupus-Survival-Guide

http://www.lupus.org/answers/entry/explaining-lupus

Trading One's Health for Money

So you're at a party and you are introduced to some new people.  The "Jenny this is Joe and Sarah, Joe and Sarah this is Jenny" scenario. Almost every time, the next topic of conversation is "what do you do for a living?" The moment when everyone measures one another on the status scale and finds their place, or puts others in theirs. It's an odd ritual and I think it stinks, but it still happens a lot. I try not to play that game, but it's easy to get sucked in, thinking that you might actually get to know these new people in a meaningful way. 

The idea that your success as a person, is directly related to your success in your job, or that your personal identity is what you do for a living seems to be a normal way of defining ourselves in the USA. It is a powerful illusion, that if we can only get that job with the correct job title that sounds important, or make enough money, or have the most ecologically friendly job, then we’ll be successful. Hooey. What we do for a living is not who we are. That said I know that making a living in this world is a necessity and it's nice to eat, and have heat in our home. However, working extra long hours in jobs that make us unhappy, and/or unhealthy, for money or status is not right. 

Trading one's health for money seems to be the norm. People who have worked hard and long at jobs that don't allow taking time to eat right, or get a modicum of exercise, or spend time with our loved ones. Jobs so stressful that it leads to smoking or other bad choices that impact our health. I believe that a good work ethic and working hard are really great qualities to be valued and strived for. But, we have put so much importance on our job title, the dollar sign, and the status that we trade our health for a paycheck. What I do is not who or what I am. I am a lot of things besides what I do for my paycheck which, by the way, I'm very thankful for. My value as a human does not diminish when I take a step back from that illusion of success and put my health before status, my relationships before the dollar sign. 

I might be taking a chance. A big one. Now that I have a part time job, I have less medical coverage and it’s a bit scary. Here's the thing though, my health is better. I have been spending more time at the gym, getting home at a decent hour, eating on time, sleeping better and having more time to spend with my loved ones and kitties. I have been spending less time at the Doctor's office, less time commuting, not stress eating, and have been spending less money on gas and medication. I think it’s been a good trade off. So when I'm introduced at the next party and asked what I do, I'll say "I try to be healthy and happy, what do you do?”

Loss, Transitions, New Beginnings, and Being Grateful

Loss, Transitions, New Beginnings, and Being Grateful

There has been a lot going on and I just couldn't write about it for a while. It is still kind of hard. Our family lost our dear father just after Thanksgiving and I am both grateful to have been there, and so heartbroken to lose our kind father. I'm thankful that my siblings and I were there to help Dad, and each other, through this transition. Having brothers and sisters that I can count on, and who could count on me, in this situation was such a blessing. We had a beautiful last Thanksgiving with Dad. I am so very grateful.

I have also moved on to a new job, which is supposed to be part time. However I have not worked part time yet and it looks like it will be full time through the end of the month at least. I'm hoping that the part time schedule will happen soon, so I have a little more wiggle room to work on my health and resting. The job is much closer to home and has already allowed me to go to the gym and get home at a decent hour, so the improvement is felt already. I really think it was a good move. I love the team I work with, they're hardworking, kind, smart and funny. Again, I am grateful.

It's interesting that the job change has given me a different outlook on my future. I’d been in the same job for about eight years and I thought I might actually retire from that same job at some point. However, this change has opened up my mind to new possibilities. I'm looking at my work future in a different way. Perhaps I might want to start my own business at some point, or find a work from home job later on, or maybe have a job that I don't even know exists yet. Not that I think that I need to make a change right away, or that I don't think I could be happy where I am now. It's just that the transitions was not as hard as I thought it would be and that gets me thinking that maybe there something out there in my future worth taking the risk for....What could it be? What could I do? It's kind of liberating.

On the health front, I'm doing OK. I've had a few flares during the stressful and emotional times, but all in all I am going OK. Still learning how to manage Lupus and my triggers. Learning how to protect myself from infection and illness around other people and at work. The work change has helped and I've joined the YMCA where I've been able to do low impact exercise and swimming to try to keep healthy without triggering flares. So far, so good.

The thing I really feel the need to work on is getting back to my social life. I've been sequestering myself since my diagnosis and I miss seeing my people. It's difficult to plan for outings or make dates when I'm not sure how I'm going to feel, or if others might share an illness without meaning to, but I think things have settled down a bit and I need to make an effort to connect with my friends and family more. So that's my goal for now. Keep healthy and see my people.