Tuesday, June 28, 2011

Praise the Bendy Straws.

Before Biopsy

Today was my appointment at the palliative care hospital, and since I know that they don't manage chronic pain in the pain clinic, I was very skeptical. I had to do this appointment as I was referred a year ago by the city's Lupus Specialist and he wouldn't see me until I met with this specialist who was a dermatologist. 

The doctor was very kind though, and he knew all about SLE and pain and fibro. He had a gorgeous accent that I can't place, but it put me at ease when I went in with a bit of attitude - at least in my head. He went over my last blood work, again from a year ago - and my ANA's went to negative for the first time so he was wondering if Lupus is in remission and that it is mostly fibro that is attacking now. I told him about the experiences and that yes, my lupus was textbook.
We talked at length about it being heard of to have false negatives with the ANA, but he did support and believe the lupus diagnosis (5 doctors have also confirmed SLE since my initial Dx).

The shoulder rash he believed was more SLE evidence, but he wasn't sure about my face rash if it was the malar or rosacea, however the treatments would be the same. He was concerned either way and shook his head that I have to endure this 'mystery'.

We discussed medications, and he suggests that I increase the Amitryptine, Lyrica (I tried not to scoff), Plaquinel, but he also suggested Methotextrate (Chemo) as his top med for me to start.
I'm still not okay with that.

As he examines me after the discussion, he says 'biopsy'. Since I was there, and have no car and have a very hard time getting to appointments as it is, I agreed to it just to get it over with. He gave me anesthetic and after a few minutes he does the biospy, however the anesthetic didn't take - and it hurt, alot. He picked a part of my right cheek, apologizes for the pain and the scar that I will have after. I was to continue lying on the exam bed for a while, and he came back and only then did my face start to go numb. I didn't realize until I felt threading and a bit of digging in my skin that he was stitching my cheek up. 

The freezing is coming out as I write this, and the pain is increasing steadily. The stitch should dissolve in a week but I have to keep the bandage on it also for that long. I look and feel like a monster. I find it hard to talk and yawn, eating is a challenge. 

Praise be to the bendy straws!

                                                                                                    After Biopsy

Monday, June 27, 2011

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 -
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.

Saturday, June 25, 2011

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.

Wednesday, June 8, 2011

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?