New normal?

The elephants have been partying non-stop, playing shuffleboard on my chest with anvils, and as any good hardcore ravers, they have introduced electrical whips attacking my chest, feet, legs, and everywhere.

Monday was a scary day, and I've been mostly trying to stay calm and not allow panic attacks. I have felt legit in saying "What is happening now?". No, this isn't just a knee pain. This is severe all over pain in addition to the severe everyday pain. 

I am not used to it, but if this is what will become my new normal, I suppose I need to. I am not sure what to do or how to deal with the latest onslaught of attacks. 

Luckily I'm not dealing with it alone. I am still finding things to laugh about, although it hurts. I am a person that NEEDS to laugh and to feel somewhat normal sometimes. If I let myself think about this too much I will go into a dark place that I might not come out of.


Part of feeling normal and laughing and helps so much, is meeting people that are going through a similar hell.  Not that my friends and family aren't doing everything they can for me, and for that I am ultimately happy and thankful for, but to be in the same room (that isn't a hospital) with people that know what it is like, is remarkable.

I would never wish this hell on anyone, not even a worst enemy (and I have a couple). 

The thing about chronic illness is that it is chronic. I understand how hard that is to really grasp. It never will go away, I will never have a pain-free day, I will get worse and not better. I am not being alarmist, I am realistic. I need to be. Would I love to live with rose-coloured glasses, yes. 

I just take one day at a time, one moment different from the next and try to accept what is happening. With people by my side, it makes it that much easier.

All I have is my love to give.

30 Things - Invisible Illness Week

 30 Things You May Not Know

1. The illnesses I live with are: Lupus, Rheumatoid Arthritis and Fibromyalgia

2. I was diagnosed with it in the year: Lupus - 2007, Fibromyalgia, 2008, RA - 1980

3. But I had symptoms since: Birth.

4. The biggest adjustment I’ve had to make is: Stopping working and what surrounds that on a dime.

5. Most people assume: That it can't be as serious as it is.

6. The hardest part about mornings are: Going to sleep. I do not wake up or keep 'normal people'  hours. 

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My laptop. It is my lifeline.

9. The hardest part about nights are: Getting to sleep. Nighttime is my time, I feel somewhat functional, at peace and happy. 

10. What do you take? I should take more than I do. It does vary per day. At least 10 pills/vitamins/day.

11. Regarding alternative treatments I: am very open to. I prefer the options of alternatives than to the 'big pharma'.

12. If I had to choose between an invisible illness or visible I would choose: Neither? Both have the severity and challenges to live with, sometimes overlapping each other.

13. Regarding working and career: I prided myself on my career, my work, my education and training that led me to do what I chose to do with the opportunities that I had.

14. People would be surprised to know: I am very scared and I get angry.

15. The hardest thing to accept about my new reality has been: The struggle to find medical professionals that I trust, that I feel my care is taken seriously and the length of time - years this has been.

16. Something I never thought I could do with my illness that I did was:  Fight to come back when I was at the zero hour.

17. The commercials about my illness: Are a joke. If I feel suddenly well enough to get on my knees I sure as hell am not going to start a garden.

18. Something I really miss doing since I was diagnosed is: Dance, teaching.

19. It was really hard to have to give up: Driving.

20. A new hobby I have taken up since my diagnosis is: Writing this blog!

21. If I could have one day of feeling normal again I would: Throw a party and dance on the speakers. And noone will stop me, but including everyone to dance with me.

22. My illness has taught me:  Accepting loss.of independence does not mean a loss of self.

23. Want to know a secret? One thing people say that gets under my skin is: "What is wrong NOW, you LOOK fine". (Said to me when I was first in the wheelchair)

24. But I love it when people: Include me, help me with the little things, make me laugh, accept me for me.

25. My favorite motto, scripture, quote that gets me through tough times is: "She's home now, She's gone far beyond that song, Rock and Roll Ballerina, where else would she go" - Rock a Little - Stevie Nicks

26. When someone is diagnosed I’d like to tell them: It's going to take a long time, new hells will happen. be your own advocate, stand strong with doctors.

27. Something that has surprised me about living with an illness is: The support from people that have stuck with me thick and thin.

28. The nicest thing someone did for me when I wasn’t feeling well was: I have been so ill where I could not do ANYTHING for myself, and to help, no questions asked, and no guilt.

29. I’m involved with Invisible Illness Week because: AWARENESS is needed for these illnesses that are severe, take lives, and take our lives as we watch it happen. We need our voices in the sea of many illness because these are so misunderstood.

30. The fact that you read this list makes me feel: Like it's okay to talk about, that I am still me, not defined by the illnesses, nor the limitations.

Thank you for supporting and taking the time. It is much appreciated and loved. 

Thank you, so so much.

Team Nuclear

Follow up specialist appointments are always scary. So when it is good news, I'm not sure how to take it, or if I am understanding correctly. I'm sure it's too good to be true.

Somehow, my blood levels are 'over normal' - just slightly but over twice the amount in December. 


My organs look okay, and my other tests, the ANA's are the bitch. They are always so confusing, but also have two months of being slightly negative. Which is confusing. 


I asked what was happening, and he didn't have an answer. I asked him about my feet - that besides the extreme pain - they go from blue to white to red with white spots. I asked him about the twitchies, and told him of the new suppliments I was taking and what or how much he reccommends.


He said "Well, you tell me then". Sigh. He did match my GP's recommendation of two LBP's at night, which I suppose is not so bad in the scheme of things - it's not chemo, and it's not other opiates.


This disease is one where  you will never get a concrete answer, and a positive can be negative and a negative can be positive. It's a fucked up brat, that takes alot to fight it, physically but mentally also.


It's an invisible disease, which means double the fight. No scars, nothing tangible on the outside - just a body tired of trying to fight itself. He is very concerned with the fibromyalgia still. However, no real plan as of yet.


I'm going nuclear on Monday. I've had radiation two years ago, and I said I wouldn't want to do it again. Who am I to say no to the lupus specialist? It wasn't an option. My option was to go to the hospital or to a satellite centre - I chose the satellite centre. 


I went to the hospital first, and that was when I was able to walk with pain, but I want a smaller place, a reasonable parking lot and it is staffed by hospital techs and nurses. 


I have the experience so at the very least I know what to expect. I promise though, I won't tweet the funky colours that will be peed out eventually.

And if I have to take out my nose piercing, I will be pissed. ;)

This is a song that was shared by a dear friend, and is my theme of the week. http://www.youtube.com/watch?v=s87FG6AQQAw&feature=search

Thank you for pressing the shiny button on the right, and for sharing this blog. There are quite alot that it helps so much with, from parking, forms, to the day to day expenses that are required. That you think enough to share is humbling, and thoughtful and I thank you from the bottom of my toes. Thank you.

Silent Lucidity No More.

 I have since fuck'd pride, and had a visit with a physiotherapist. He was very kind, and very compassionate, I was shocked. For some reason kind and nice strangers still shock me. I have had to put my safety in his hands at home. It's one thing being bedridden, but it's another thing to not be able to get up easily or take some steps safely. Often those steps are met with tears.

Mr. physio had a bed rail, and a bath bench installed. He supports the use of the wheelchair, of course. The bed rail is to help me up, not keep me in, although there is talk of one of those hospital rails with the tray coming. At my surprise, the bed rail is amazing. I have no idea why, since my feet still are a write off. My path is this, out of bed, one step to reach the footboard, another to grab a chair (which has heavy things on it so I don't topple over with it) another to the doorknob, and the frame, another to the linen closet door, and then to the frame of the bathroom. That is usually adventure enough for one day. 

The bath bench is a luxury bench, it has an extended seat so I can avoid stepping into the tub, a backrest and a railing. The first time I used it I had some vertigo or a 'sode as I will explain further. It helps, but is very hard to get used to, and I am still unable to shower on my own. When I am alone I can manage as my Nana called a bath in a teacup. Baby wipes are a lupie girl's best friend in the loo. I try to make it to the living room once a day, but there is nothing to hold on to, and I can't use the wheelchair much on my own either, both for the small hallway and the searing rib and chest pain.

The physiotherapist came back to see how I was doing. We sat on my bed and had a great heart to heart. He said, "You are too young to be in so much pain and to deal with all this." I am proud of myself for not tearing up.

To explain what I call a 'sode - short for what I call a 'lupusode', which let me say what it is not first. It is not a flare, it is not a shooting pain. The pain is steady and it seems that I spend a few hours some days in a strange sort of dizzy, like nothing I have experienced before. Sometimes they can be fun, sometimes damn scary, sometimes it is like a lucid dream, others I am confused. Almost as if my body is reacting to the pain, trying to cope while it doesn't take the pain away.

I have been home for about 6 weeks now and have since gained 10 pounds, so I am a full 98. The newest pain is searing rib pain, mostly on my right side. It starts from my back, tightly under my right breast and feels like shooting straight up to my clavicle. Again, it is constant, and it is worrysome. So much so that I gave in and went to a clinic this past weekend. 

Of course being a clinic, we had to pick one issue to deal with. We chose blood. I need a transfusion soon, and I am hoping to get onto a standing order with the ER so that I don't need to jump through hoops as I am now. I am not willing to wait for the blackouts to tell me to go. Monday I went to have the tests done, and I wanted to take a chance and go to the office my lovely Dr. Ron was in, it's quiet, the phlebotomist knows my veins. New nurses were there, and took me right away, again rushed my labs to two-three days. The nurse came back to tell me there was a new doctor taking new patients - in Dr. Ron's old suite, we met, in the same exam room that changed my life. She upped my meds to 2-3 Amitriptyline/night. Today is my second day on the upped dose, and my sleep is a bit better. However, I know that there is no chance that I would function in the grown up world - I am not a complete zombie, yet I wouldn't be able to drive or work on it. What the hell, try it now, what's the worse that can happen, I sleep? 

The new doctor also brought up Lyrica, which is a new med recently approved for pain or arthritis and fibromyalgia. You know the commercials, I will be on my knees gardening in no time!  I'm not buying lyrica, but I am no doctor, I know my body. 

I know there is no pain when I sleep. I can dance again. I can walk and laugh and have adventures! 

I still have my sense of humour that comes out even more when I am stressed. Getting back to the truck after the doctors visit, I stood up from the wheelchair, put my arms in the air and yelled out "It's a miracle!" in front of high school students. It was my third day out in 6 weeks.