Lupus Isn't Pretty

 I came across an article today on webMD, the author and the link to the full article are cited below. I must address these points as are from my experience. I have read numerous articles that have similar points - while I know I am a very advanced case, I have to reply.

Managing Lupus Pain: Finding What Works Best for You - Full Article - http://bit.ly/mShkEc

Christine Miserandino  

• Exercise. Some people who have lupus swear by the benefits of getting regular exercise, while others can't get out of bed, and find it close to impossible to even think about going to a gym.

As a dancer, being active is still so very important to me. I can barely walk now. I try, and admittedly push it against orders, but I need to do what I can. Yes I am mostly bedridden, so I try physio from bed and use my body as I can to get stronger. When someone says, just use the stairs, it's good for you, it's not understanding the physical limitations that are stellar. It is not easy to make it to the bathroom, forget Zumba (which I would love to try).

• Massage Therapy. A soothing massage can help ease muscle tension and aches, but if you are sensitive to touch due to fibromyalgia or any other condition that is secondary to your lupus, this treatment might not be right for you.

My pain is much more than aches. I understand many people undergo similar and when air hurts, a slight breeze, the thought of a massage isn't going to work unless the practitioner understands the true nature of the disease and the consequences of the impacts. The costs are high for such therapy also, while it is so lovely and I was lucky enough to be sent for a massage from a good friend once, my RMT was very knowledgeable. However on an ongoing basis - not an option as stated in the paragraph, my lupus pain is also severe, as is my fibro pain, and my RA pain. Pain in many many layers at the same time are hard to understand even to us going through it. What works one minute might not the next. Think about the consequences - bruising, impacts, blood clots, etc. More than just an 'ache'.

• Medications. Many patients work with their doctor to find the right combination of medications that may help reduce pain.

The combination of many medications, plus other medications to manage those side effects, plus more to manage those side effects is a dangerous spiral. I have mentioned many times that I am not a candidate for most medications, and due to that I won't put myself through that nor do I have the cost involved in using such medications. I am happy that people can find a cocktail that works in managing their symptoms. However as said 'Many' patients can work with it, but then others do slip through the cracks, as if you actively follow my story you can see.

• Other Strategies. Some people prefer to try heating pads, yoga, meditation, physical therapy, or similar measures that can help decrease the pain of lupus.

 Sometimes heat helps, sometimes cold helps, but it's again not a rule such as 'always use ice for swelling'. Yoga, please refer back to the first rebuttal. Meditation, no amount of unicorns/rainbows/waterfalls in my head works. Yes I have worked very hard on physio, does it help my pain, not one bit. However I have gotten stronger and luckily I kept the dancer flexibility I have always had. 


I am frustrated and very much at my wit's end from the day I have had. Part of is when I hear a "Have a pain-free day!" That would be wonderful. It won't happen, so it is another reminder that there is nothing for me, and I am but one voice. 


The real story needs to be told since this is such a misunderstood disease, even by people that are living with it. Living with it does not always mean fighting it.

Chronically Awesome

It is very hard when you are in so much riddling pain to know what is something new and to get used to or to get it checked out.

You know that my life as a ballerina causes alot of injuries for the sheer nature of the career. 

I have sprained, broken, twisted, fractured many bones in my feet and legs, and somehow this week I woke up to not being able to walk. Again, but for different reasons.

My right side was out of commission, needing my chair in the apartment for the new pain. In my head I don't know if this needs to be looked at or if staying off it will work or at least help.

It feels like intense pain but with my entire leg doing a 180 turn on me with no warning, but I couldn't walk at all. Today is a smidge better but I still need help to walk and I can't use my chair on my own if I am sitting in it. 

I refuse to sit in the ER for 8 hours when there is nothing tangible they can do, I am not in an emergency situation, it's just I can barely walk. 

Oh yeah and I can't tolerate this layer of pain. I am like a a reverse onion, more layers and more layers to deal with but with no compromise.


There is no "hey buddy, I need to cause some hell, how bout you step off and take a break". It is another reminder that I am losing so much, and something else to get ready for, and try to get used to. 


Please be gentle with your #chronicallyawesome friends, and we need support alot even though it's not always said from us. 


Many diseases get the attention, however, still - lupus and fibro and RA etc don't get looked at all but it is so difficult to live with day to day.


Someone you love is sick but you can't see it.

Thank you for seeing it for me and for many of the people that are in my life and love.

Easy Breathe-y

My cardiac tests came in yesterday, and when I called my doctor to update on the ongoing and worsening chest pains she asked me to come in as her first appointment of the day. 

I have had such worse pains, which I thought must be costochondritis, causing major coughing and even bringing up blood. As expected, my cardiac tests came back clear adding to the ongoing mystery that surrounds lupus and other invisible diseases. 

My doctor is really wonderful, she doesn't rush, she talks with me - not at me. She really tries to think outside the little box. I am so lucky to have her. She gave me PFT Test in the office and compared them to the first one I had a year ago when she took me on. Those results immediately alerted her that there is a "Severe Obstruction" and it is serious enough to seek more answers. She isn't sure why or what is obstructed and sent me for chest xrays and a prescription for a small ventilator that I need to use 6 times a day (according to her Rx). The other odd thing is that I don't have asthma, my allergies appear as migraines or sinus headaches so possibly this is due to the lupus attacking my tissues and organs. She did confirm costochondritis but said that should not affect my coughing and breathing so much.


I asked her about the codeine experiment, and that is a no go. As explained to me, it should only be used for very short term, and as advanced as my illness is it would be very dangerous because my body will quickly get used to it and then I will need more and higher doses and never get off it. It is not for chronic pain. I will miss the codeine sleeps.


Hopefully there will be some answers or at least clues from this next round of tests. I know and understand I am getting worse and won't get better, but a bit of pain ease somehow would be wonderful. 

My doctor also said that I looked better than she's seen me. That's something right?

Cardiac Don't Mess Around

One great thing that medicine doesn't take it's time for is chest pain. I had an appointment within a week. I went to the hospital today for cardiac testing. Every dopplar/ekg/ultrasound I have ever had has been very traumatic, yet I wasn't as nervous until right before. However stressing out before cardiac system tests would not be so good. 

The tech was very kind and very gentle with her pressure, although points did hurt quite a bit of course. Luckily there was nothing that showed up as emergency, and I was sent home. 

I'm now feeling extreme pain, intense pressure on my chest and into my spine, and same pushing on my arms, shoulders - my breathing is a bit laboured. Still, I have been through tests that have been much worse. During the test some was audio, I said, see the elephants ARE in a rave in there!


I am 99.9% sure this is costochondritis, and not my heart itself - yet I know this will be difficult to say that it is, but much easier to say what it isn't. This is possibly the most frustrating thing about lupus, and why awareness and education all around is so important. 

On some good news, there is help coming - help that will be available to keep going as I am, with help to and from appointments/tests, and help with social services to help advocate my case for disability.

I am not used to 'powers-that-be' in my corner and I am still in shock and a bit overwhelmed over the entire reality of the situation, but I feel much better and partly my resolve in human decency has returned a little bit.

People do care. It takes a ton of fighting, but it is worth it to find those that will fight along with you. 

Now I have to stick things up my nose to get rid of the hospital smell.

Suck It, Dr. House

For Lupus month, I had the opportunity to be interviewed on my experience with lupus, fibro and RA. It is a very raw look at my life, from when my body started to turn on me and the entire story. 

Please do listen to the show, share it, and comment. It is important to spread awareness, and have the REAL stories come to light.

Thank you for sharing and supporting. 


The show is found at www.uncast.net - Show #206 - "Suck it, Dr. House"


Thank you Daniel and Victoria for allowing my voice to be heard. 

Giving Up?

As living with any chronic illness, we have a number of barriers to overcome daily, and every minute. Sometimes it is hard to wake up and deal with another day, entirely in pain unable to do what we used to. Because these are invisible diseases, we don't have scars that people see and we have alot of judgments. 

Some judgements come with a 'why are you not trying everything possible, you are giving up, letting your disease win'. It is not that easy. This post is inspired by this article I read from Lisa Copen writing for the Huffington Post - http://www.huffingtonpost.com/lisa-copen/is-living-with-illness-ch_b_853990.html?ref=fb&src=sp

In my journey so far, I have been told I am giving up, when I am refusing certain treatments. My reasons are based upon what my doctors have suggested, my questions to them and other medical and pharmaceutical professionals, and my own research including my own body.


As I have mentioned in previous posts, I do not respond well to meds. I cannot take anti-inflams, NSAIDS, and the like. Being on such medicines, then going into the cycle of more meds to counteract side effects, on and on, I cannot afford costs nor can I afford what it will do to me. I am constantly amazed at how many people take whatever is prescribed blindly, without knowing what they are on nor the risks associated. This is giving in. 


I have been through radiation, and I do not want to do this anymore. I am and will continue to refuse chemotherapy. Is this giving up? I do not think so. 

I am in this journey on no meds, but I still try to make it through a day. I have lost everything, but I am still me inside and I won't become a zombie and wait for everything else to pass me by. 

I am stubborn. Giving in? No. Realist, and taking charge of what I can with what I do have left. Yes. 

Kindness, Strength VS Douchebags

In previous posts I have mentioned that I am rebellious and stubborn. I still have learned from my mom for this all.

Today was beautiful out, and I expect that these next few days are going to be stormy and heavy rain according to the reports.

I needed to go outside today. My balcony didn't cut it. I put real (kinda) clothes on, and grabbed my wheelchair, and hit the streets using the chair as a walker. Not so fast though. 

I thought I would add a bit to my physio to walking a wee bit in my apartment building. I ended up to the lobby, stairs down, then stairs up to outside. So I tried. Done. I thought, okay, maybe I can make it across the street.

Done.

Maybe I can make it across to the lights on the main street, done. HOLY SHIT. 

I kept going, and going, to the mall, and back. Each little step was a new accomplishment.

In the end, I did over 2.5 miles of walking. Plus 4 sets of stairs, with about 5 each, with navigating my chair too. 

The one thing, once I got back, and I have never done 55 minutes on my own feet straight in years was taking me back to why I hate my city.

A youngish guy that lives in the building saw me struggle with getting my chair up the stairs to the elevator. It is the only way to get to the elevators, and then he slid into one of the open elevators without a help or an offer.

That is fine. I didn't expect, but wow. Just proves my point about people not giving a shit about others. Disgusting.

So to be as selfish - I went 2.5 miles round trip. Not sitting once. 55 minutes, total. Including the real people talk time I did along the way.

I won't be able to do this again, and if so not for ages, maybe. Such is the way of these chronic illnesses.

And those of you that do read, I know you would do support and help if you saw anyone in my position, because most of you know what that is like. You all know I don't bitch much, but that my lack of bitching doesn't mean this shit is a party. Thank you for supporting in that I can't do.

Heartfelt thank yous to you all that  DO care. I trust my fragile life with you.