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?
I met my 4 month old niece this week. This visit was so very special. My mom and I had my cousin and her new baby come from Calgary. What was unintentional, but was amazing was that yesterday, my grandmother would have been 100 years old. I was lucky enough to share that day with women of 3 generations that I am so close to. We share a same sense of humour, (if you know me, imagine three of us in the same room), same eyes, same hands. It's amazingly special.
The baby and I got along very well, and she also seemed to have an instinct to be gentle with me, she had some strength in those wee legs, fingers and was wiggly, but as I was holding her, and we had some pretty good conversations, she was wonderful. I do believe in strong connections, no matter what age. As my psychic witch friend would be surprised to hear, the baby is a Taurus and I am a Sagittarius.
This was the first time I had seen my cousin since I became so ill. I know it was a shock - as it is with everybody that knew me before. What was so incredible, was she still saw me as me. I am a person with this, I am not the illness. It was no questions - or guilt, or anything such as, 'why can't you...why don't you...have you tried...', it was unconditional and love, like no time ever went by.
This is so valuable and special, and wonderful to me. I am very lucky, as much as people are and have faded away, I have caregivers - those are the ones that are checking in, that physically and literally hold me up, are there when I can't do anything on my own, but also there to watch and let me try to manage small things, and hold me when it is too much.
So to those that have been there, that are there, in your own ways, I thank you, and I love you. Thank you for making me laugh, letting me cry, letting me cry because I am upset about crying, feeding and keeping me going with meds, and foods. Asking me the hard questions, I know is difficult and sometimes I don't know what to just say either.
Come to me, ask me, because during this week - Invisible Illness Awareness Week, is a time that we need to get the awareness out to the masses. This is something so misunderstood, and often - people assume and won't come out of that. That is okay. It is hard to cope with, and hard to deal with. I understand.
Thank you for being there, for reaching out. It makes a world of difference, and it means the world to me. With how much I have lost, I have gained so much. Thank you for making me laugh, and being 'okay' when I can't.
Thank you, so so much. It is not for granted, but cherished. I thank you. Really. THIS is the best medicine.
