Where Have I Been All This Time ?…..Well Let Me Tell You x

Where has she been all this time?, I may hear you ask.  quietly to yourself. No updates, no replies, no new written entries, photos or pictures????  Well let me explain my precious friends x

As you know, I am battling against the ghost of Stiff Person Syndrome, which has hit me hard and fast, I thought I was strong enough to control it, not let it control me. However , five months without any hospital treatment was crippling me with each passing day. Each day I would be woken by my husband to take my first dose of medication, struggling to swallow , speak, move my limbs, open my eyes, Each day more tortures than the last. My spasms/seizures increasing in strength as the sun set and rose once more. I tried to stay strong, truly I did……but behind my sparkling smile , lay an invisible veil of tears. I was becoming so weak, my tears  slowly trickling when no one was looking…..droplets soaked into my pillow, tears of pain, fear, shattered hope,

Finally , a ray of light began to glow. I received a treatment plan compiled by my Consultant. My treatment could not begin soon enough for me, I was wishing the days to pass, begging in my mind for my treatment date to arrive. Then there I was, finally I lay in a day unit hospital bed having my first , this year, 10 hour Intravenous  Immunoglobulin (IVIg) , on the 12/5/14 and then again the following day 13/5/14…….five months since my last IVIg infusion. I was at the point of desperation and despair as my condition was deteriorating at such great speed. I still stared at the same four walls in my bedroom, as I had done since December 2013. The IVIg gave me hope…..Hope to build my strength, decrease my spasms, take away the need for supplementary oxygen. Thus aiding me with the best possible chance for success of the trial of my Stem Cell Transplant procedure, that I am currently fundraising for.

Goodness me, I could not have been more wrong.

Every step was taken to try and minimise any adverse reaction to the IVIg (pooled plasma , from thousands of kind hearted blood donors). From past experience, both my  beautiful medical team and I know how sensitive my body is to IVIg. Thus over the two days (12th and 13th of May 2014), my husband took me back and forth  to the Heath Hospital Day Unit for two days of 10 hour infusion.  The travelling was torture to my body, I cried with the pain. The change in temperature of  just being outside, the vibration, noise, movement of the car triggering strong spasms, oxygen continually needed as the spasm contracted my abdomen, chest and throat muscles, leaving my oxygen levels to plummet without the aid of supplement oxygen. The rate of the IVIg needed to be kept at an extremely low rate of 36ml per hour to try and avoid any ill effects. However, myself and my beautiful medical team did manage to increase the rate to 80ml on day one and 60ml on day two. However, by day two I was beginning to feel extremely ill. After completing my two day infusion, catastrophe hit….and it hit me hard.

I am going to post some pictures of me during my IVIg and the equipment used so you can follow my journey with me. Then I will continue to tell you……what happened next???


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