Strong Butterfly

Today was the DVT test, woke up early and despite my fears and 'what-if's' and being awake in the real early morning, I wasn't even cranky.

Being super packed the night before helped, and of course my favourite red hoodie and matching flannel PJ pants, like hell was I going to wear real clothes out. Besides, my transfer chair is red too.  I tried my old hiphop shoes too, and being split soles, they were such a help. Didn't take the pain away, but I had more control and felt somewhat good (in comparison).


Checked in to the hospital 30 minutes before the test was scheduled, and as promised I bypassed triage completely.  I was then taken to the waiting area for the testing and imaging units, and I was grateful that it was small, and curtained areas. 


My tech nurse was quite nice, but she started by saying she couldn't do my tests. I felt my eyes start to well up and felt a bit of hopelessness come up. I asked her if we could do the DVT at all possible, because I didn't know what else to do. She agreed to that, but clarified the other two tests on the requisition were not able to be done there. Such a relief, as those tests are booked elsewhere on November 10th. 


I was decked out under my PJ's in some of my old dance clothes which helped so I could stay a bit warm and still not be in full undies, since I don't know how much is shown to the world. 


She gelled up my left groin first and asked me about pain, since she had to press quite hard with alot of force. I told her that I might cry and gripped the bed rail. I think I bit off most of my chapstick during the test.


The pain was tolerable till she got to my knees, and pushed hard underneath and with her hand pushed down on my kneecap, and followed the arteries down to my achillies. This was the toughest and searing pain on top of my already searing pain. 


Still no real tears.  She repeated the same on my right leg, I continued to bite my lip hard, grip the bed rail and tried as much as I could not to jump. 


The final part of the test was sitting up with my legs hanging off the edge, one hip more in front than the other. As soon as she was done, she helped me to get the gel off, and she said I did so great. I really appreciated that so much. 


She told me the results would be to my doctor in a week, and I took a huge breath. I have been terrified of the worst. She said quickly that there was no sign of any clots or PE. However, I'm not supposed to know this until I go to my doctor for the details. So nothing conclusive as to what it is, but at least one more thing that it isn't.


This is when the tears started. I was shaking, but not Oprah-Ugly-Cry.


Fell right into bed when I got home, and slept for a while, had a visitor and slept some more. I expect this will take days to get over, as my knees are now twisted and my muscles are screaming, and somehow my ribs feel even more popped out than usual.


I'm relieved, and this is over for now. The next major tests are still coming, and this will be another tough and longer ones.


Again, thank you for sending the love and support, and to my friends for updated and being my voice when I couldn't do it myself. 


Loves, here's to no clots. Time for a glass of wine, it is a blood thinner after all.

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.