Which do you want..?

Good news or bad news first?

Tuesday I saw my GP and let me just say how lucky I am to have found her. 
She is as far as I can tell, wonderful, thorough and is thinking outside the box.

Good news - yes, it is in fact lupus. (duh) Still a struggle to get new doctors on board, you hear this Dr. House? 

Bad news - it's also possibly MS on top of lupus, fibro and RA. Not much a surprise, since these autoimmune monsters travel in packs. 

She's upped my lbp (little blue pill) which is Amitriptyline from 10 mgs to 25 mgs /night. She agreed with me that the other pills other doctors keep trying to push on me is too dangerous for me - namely the MTX and the plaquinel. There is a possibility she will put me on Celebrex, but she offered to try 3 ibprofins a day, however I do have an allergy or intolerance to it. So less of many evils perhaps.

The real heavy news now.

She has ordered new tests for me - Peripheral Arterial and Ankle Brachial Pressure tests, which I will have at the same centre that I had the radiation. 

The third test is the scary one - the DVT on both legs. This cannot be done at the same time as the other, and is actually urgent. The centre says that I have to call at 7:30 am everyday to see if they can take me  - however transportation is not so easy since I am so dependant on others, and they of course work. Public transportation is not an option.

This centre told me that if I can't get in,  to please go the the ER - asap. 
I have called my GP again and am waiting for anything she can advise me to do, with the many challenges that I have. 

Since I can't drive myself, I do not have my car anymore. It's so hard to depend on people, and I am so grateful for the time they do take off to help me. 

My feet do turn blue and go from blue grey to red with white spots. I know my blood is messed up - since I am not producing many of my own cells, and since I had the transfusion. 

There is something severe that is wrong, but this urgent, and telling me I have 48 hours to get tested, with the other voice at the end of the phone saying she begs me to to the ER asap, is scary. 

I'm very overwhelmed and sicker than even I thought. And that is not so good at all. 

Will try to update as I know things, currently just a waiting game right now. Waiting means thoughts in my head, and this also means I am beating myself up over it. 

Thank you for your wishes, thoughts and words. Every little bit means so much, and is treasured.

Today is an Anniversary...

One year ago last April was the start of my downturn.  One year ago today, was the start of my demise.

I woke up on the elevator floor, with a commotion around me. The elevator was open, and held on the ground floor. People were on the phone, and I heard sirens. That was an ambulance that was coming for me.

I remember getting dressed for work, I had a can of soup in my pocket of a new red jacket. I was feeling so weak, as I hadn't kept any food down since April, and still had my period. I got to the elevator, but don't recall getting in it. Thankfully I did, and my neighbours said I crumpled right away like an accordian. 

I woke up with the neighbour that I suppose caught me from behind, and luckily I didn't hit my head on the floor. My landlord was on the phone, and not sure what happened, but I do recall the feeling as I was going down. It was somewhat gentle, and just a 'I'm shutting down' as there was no fight in me to do anything otherwise. 

The paramedics came, and spoke to me in the elevator before trying to move me. They asked me the standard questions, what year is this, what day, my name. He picked me up, and convinced me to just check my vitals in the bus. My blood sugar was perfect, my blood pressure was okay, but still I was trying to convince them to let me go to work.


My landlord asked what she could do, and she called work to say I wasn't going in, as much as I kept trying to say I was fine, and had to go.  She was such an angel. I was able to call my mom, who made it to me in under 10 minutes.  I think she called my husband, but I'm not entirely sure. I was able to text friends, that helped tell our circle of friends for me what was happening.


I accepted that I wouldn't go to work, but wanted to go upstairs, and just sleep. They hooked me up to an EKG. I put up such a fight they called their EMT supervisor of the entire city. I'm not sure what made me give in, but they let me pick the hospital to go to. 


I was put right through triage, and in the ICU right away, no waiting for a bed at all. Hooked up to wires, and sounds and beeping and IVs, and I was so damn tired. And cold. The best part about this hospital is the warm blankets that were there, somehow my husband knew (his family works at this hospital which is why I chose to go there) and kept giving me new blankets once they got to room temperature. 


I had some visitors, but I was still in just curtains. I eventually was given some cheese and juice, which I think stayed down.


I was scared. I tried to make jokes and remain alert, but I am not sure if I slept at all. I do feel bad still that I kept mom and the man away from work, and that I had to have someone work for me. 


I was finally released, not sure after how many hours. Not even sure when I made it back to work, if it was a few days or a week. 


I know I should have stopped working in August. 


One good thing, I am so grateful for is that I blacked out at home, I wasn't driving. I can't even fathom that horror if I was behind the wheel and if I hurt somebody. 


I've been haunted by this day ever since. I made it - an entire year later, and I am very ill, and much has changed, but it could have been so much worse. 


I am thankful for the kindness of strangers, and I can't imagine if I blacked out inside the apartment, or in the hallway, where I was alone. Not sure what could have happened if someone wasn't there right away.


One year ago today, was the start of my demise. I continued to get much worse.


One year later, I am still here. 


It is still lupus awareness month, please help to get the word out. Thank you.

 

Slipping Again

I am a really a very patient patient. I took a week off of worrying due to Thanksgiving, where I had some dearest friends travel far and wide to spend here. It was great, and of course they were wonderful in understanding what I can and can't do. It was so special and very small compared to other years, but I just couldn't do anything on a large scale and organize a whole long weekend of events and things.  There were a few things that I couldn't do, but that was okay. Just having them here and close was amazing. 


They took me to the neighbourhood mall, where I haven't been in a year. It was very hard, but I did feel safe, although I don't want to do it anytime soon. I was in the transfer chair, and feeling shy and scared; sore and vunerable. I did see some people that were familiar, but didn't know them enough to chat. It was those kind of looks, the confused, the wonder, the pity. I damn hate this pity. I'm STILL me. 


The hardest thing about having visitors is the goodbyes, and I'm still having a hard time with it, even though I will be back to California in the new year on my winter escape. 


In preparations for the trip, I've been calling my doctors to make appointments to refill my prescriptions (that don't do anything but I can't just stop them) and to find any latest results.


The latest and most important ones that I have been waiting for is the radiation. The doctors don't have them, as of today still. This is how many weeks now? 


I'm trying to be strong, and nice, but I'm scared of what they will say, or have me go through again to get it done if they got lost. I'm scared of falling through the cracks - again. 


Falling through the cracks means that I'm not good enough for care, I'm a lost case and either they don't know what to do with me, it's also they don't care to. 


I'm very confused, and the pain is also in new places, new intensities, and it's frightening and defeating. I need help and I don't know what to do.


Is my only option hospice? No thanks, I'm not ready for that. That is giving up. However, I need care, I am stronger, but I am not able to jump back into normal life. 


My heart is breaking all over the place. 


Thank you to friends, family, readers and listeners. October is still Lupus Awareness Month. I implore you to help this awareness not fall through the cracks and be overshadowed. We need awareness out there. Someone you love has Lupus, and needs help.

Invisible Again

As not a very political person, I have always taken my right to vote seriously. There has only been on time I haven’t voted in an election since I turned 18, and that was the fault of the elections that didn’t add my new address info when I submitted it.

Even though I usually find most of the names on the ballot some lesser of a handful of evils, it is my right, and I am lucky to be living in a time and country where it is so.

We are heading into a municipal election shortly. I called the elections office today since my abilities and accessibility has obviously changed. I was told there are new polling stations to help ‘the disabled’. Which is lovely, but doesn’t fit me, as it’s mostly for visually and/or hearing impaired.  

I inquired about a mail-in ballot, but that is not an option. My only option is to vote by proxy. In order to do this, I have to sign and fill out 5 pages of forms, in the election headquarters, in front of the City Clerk. (which is only open during regular business hours) I again asked – very politely – is there not anything else that I can do, I am housebound and bedridden. They offered to mail the forms, but I still have to get my little butt clear to the other end of the city to arrange for the proxy. 

I am not a shit disturber, really. This does anger me, and I am quite hurt by this. This is larger than just missing a vote day. This says leaps and bounds about – dare I say – the D word?

I do feel like this is discriminating. I cannot be the only person in such a situation, I cannot leave my apartment without depending on others, and I cannot meet these terms. Why is there not a mail-in ballot? Granted I can’t get out to a mailbox either. Why is there not anything else. I called twice. Spoke with two people, and this was the same result.

I’m hurt, and it is another slam in my face. Well done elections. Nice job politicians. No wonder you don’t hear from people like me or represent us, you don’t hear from us because you can’t.

I should probably call my neighbourhood counsellor, but sometimes I’m just tired of everything being a fight. 

Thank you for keeping us invisible.

It’s not okay.

I made it through a week on my own, and I’m still kickin’. I was under strict orders to not use the stove, oven, toasters, heavy machinery, forklifts, knives, elevators.
I still ate, about twice a day and a snack if I felt like I needed it. I walked alot in the apartment, and even tried to make my 100 crunches a day. It’s a far cry from what I used to do, but right now, walking by myself for a few steps is a major accomplishment.

My feet are not great, continuously going from blue to red with white perfect spots. The spots are crawling up towards my knees. I am waiting on the results of the radiation, and before snow comes I have to make another appointment with the doctors. I am getting very tired of hearing ‘I don’t know’, or just the blank looks. I am broken and I need to be fixed. This is not new. It’s just getting very old and tired. It’s that daily fight, and yes sometimes, I want to sleep it away. I don’t see that as giving up, just needing a break. It is quite overwhelming.

October is Lupus Awareness Month in the United States. There are so many misconceptions about this disease, and it does affect everybody differently. I happen to be very bad. However, one such misconception that I heard on a talk radio show based in the States was that it all all diet. Yes, a good diet is good for everyone, and yes it helps. However, claiming – and yes – I am taking this personally right now – that I am sick and got sick because of weight and inactivity and poor food is utter bullshit. When I got sick, I was dancing and teaching everyday. By the way, the statement that ‘those who can’t do, teach’ is also utter bullshit. I ate very well, I was 130 lbs of solid muscle, I cooked for myself and worked everyday, a couple of jobs. I was damn good. So if nothing else, I am proof of this being bullshit. Lazy was not in my vocabulary or my repertoire.  So talk that I’m anorexic or lazy, and the like, is angering, sad, and it’s not okay. Yes I am tinier, yes I am so tired, yes I cannot do things that I could a simple as they are, but it’s so much more than that, and assumptions are not okay.

For this month, if you care to give anything, please help the awareness of this horrible disease. There are many that are horrible, which is why it is called dis-ease. As a very close and dear friend says, “sometimes sick JUST HAPPENS”.  Thank you for hearing me out. I know many listen, but still others don’t hear.
As an aside, thank you for your generosity in time, in thoughts, and pushing shiny buttons such as the one on the right. Thank you, it is more than I can express, and without you, I wouldn’t be here. 
I thank you for helping to make some parts okay.

My love to you.