Time Just eludes Me…..Fighting Stiff Person Syndrome ♡♡♡

Seriously,  where does the time go?  It’s like the hour glass has been damaged , so the sand is running out at great speed. I wish I had the ability to freeze the passing minutes ♡♡♡

As you are probably aware my sweet peeps, my treatment regime has changed somewhat, which is giving some positive effects 🙂 However, to have the privilege of a few hours saving grace with my tots, I have to undergo three days of IVIg, which lasts usually twelve hours each day, without complications…..on a regular eleven day cycle, So it truly does feel like after I have had my three day infusion , and take a few days to recover…..its almost time to go back to the hospital again. But those good few hours that I reap from the treatment are magical 🙂

The IVIg causes so many adverse reactions for me…..it is extremely difficult for my body to tolerate, despite my Neurologist and my infusion team taking every safety measure possible. Tomorrow (26/8/14)  I am trying a new brand of Intravenous Immunoglobulin……I silently wish, that this, combined with extra Intravenous  Steroids , Chlorphenamine and a  slow rate administration of the IVIg will minimise the constant pain and detrimental effects I have to endure.

I have been given a treatment programme of 90mg of IVIg for the next three cycles off treatment and then 80mg for another six cycles…..on a continual eleven day basis. In addition, my seizure medication is now part of my daily medication , instead of it only being administered during a seizure. So far, I am finding this helpful, thank goodness. I must say, my Neurologist is being extremely vigilant and is now accepting the seriousness of the next steps we need to take. He is currently in contact with London, asking a leading Consultant in autoimmune diseases his opinion regarding the HSCT, whom I have already had the pleasure of meeting and gave clarification to my diagnosis. This gentleman works very closely with Haematology…….and I am very hopeful that they will consider me to be the first person with Stiff Person Syndrome to have the Stem Cell Transplant procedure done her in the UK. It really is remarkable, that this maybe a possibility. However, I understand  I will also remain part of the on going trial that has already been implemented in different areas of the globe.

See the photograph above? Me and my sparkly smile…..constantly fighting the ghost, every second of the day. The smaller picture is of me during my last IVIg Infusion……as you can see, it is not an easy treatment for me. However, one has to weigh up the positives against the negatives. To me , a few hours of relief sporadically, is worth the rest of my time fighting.

So its an early 4am start for Jason and I tomorrow…..despite our troubles, he will be by my side taking care of me, he really does have a kind heart…..but sometimes the circumstances in life can become overwhelming. Try closing your eyes and imagining your life was stolen from you and your family…..how would you cope?

So my sweet peeps, I will arrive tomorrow at the hospital, with my positive attitude and sparkly smile, as always….silently wishing the Infusion will run smoothly xxx