The Week that was.....

This week bought a line up of appointments for me. I had been on a waiting list for 6 months to get into the Chronic Pain Clinic in Lismore and I had that appointment on Tuesday. Over the last 8 months since diagnosis I have been on numerous tablets daily for pain and nerves and other symptoms for Transverse Myelitis. Some of them make me nauseous and sometimes I will vomit. Others make me tired which does not help when a major symptom of this illness is fatigue. It is a catch 22 because if I do not take the medications I am unable to walk around on my stick and do what I can do now. At the pain clinic on Tuesday we spent a few hours going over all my symptoms, when they are worse, when they are good. What works, what does not work. Nothing was left unturned. Although I smile most days especially in public I have bouts of depression. Those days I stay home or I avoid stopping and talking to people in public so I maintain my “happy” nature and do not cry in public. So to add to the mix an antidepressant has been a suggested that is also used to treat neuropathic pain. Hopeful it will help with the down moods as well as assist with the other medication for nerve pain. After everything was discussed to length the final doctor I seen was one of the most courteous, understanding and lovely men I have ever seen. He came up with a new plan of attack for medications, doses, when I take them and made changes to some of the current ones to help with the nauseousness etc. I was happy with what he suggested as I want to take the least amount of medications as I can, without compromising my care. Having an upcoming 3 month Neurology check up at Gold Coast Southport hospital with the Neurologist I was under in hospital the Pain specialist suggested taking his report and seeing if my Neuro approved. Thursday I went to my appointment at Gold Coast and firstly she was happy with the Pain clinics adjustments and signed off to approve the appropriate changes. The first thing she told me was that she could not believe how wonderful I looked. After the usual Neurologist examinations of my body, she said the sensory loss had not improved at all and all effected areas of my body were still at the same level they were on discharge. My leg leg and abdomen remain numb to heat, cold and pain. It is a very strange feeling being able to feel touch but not sense what it is. Sometimes it is an annoying sensation and other times it just frustrates me because I want to feel cool on me when I am hot or vice versa. She said there was still a chance up to 2 years that this may restore but it was unknown if, or to what level any sensation would return and if it will is something that they can't predict. The changes to my right leg movement had improved over a three month period but very minimal compared to the first 6 months and she said to be honest she is still surprised I was able to walk in on my walking stick, that whilst in hospital she thought I would not walk and she said the plasma exchange was my life saver. She made me tear up when she said “Leah you still have the same smile and positivity you had when you were in hospital and that is what is getting you through”. See I told her that I lost it some days and didn't feel the least bit positive and that I whinged at home some days. She said that was normal and the bad days are a positive part of healing. Being able to let the frustration out is important. She has scheduled an MRI of brain and spine in 3 months before I see her again. Transverse Myelitis is in the MS family and after an attack of Transverse Myelitis you are at risk of developing MS. I don't think of it most days but now and then it worries me that it may develop. My neurologist said my progress will be slow and I must not let it get me down. Keep doing what I am doing and see how and if the spinal cord heals over time. They don't clear you of MS until after 2 years so we will just not stress and remain positive that nothing will develop. I saw my local doctor whom I see every fortnight for monitoring and she was happy with the weeks appointments and plans. So that week is behind me and it is Saturday afternoon. I am sitting in my lounge room writing this and my stomach is fluttering at the thought of tomorrows fundraiser. How I am I going to get through the day with so many people to thank that care so deeply. I am afraid that at some point I will get overwhelmed and my emotional side will come out and leave me vulnerable to the thing I have been trying to hide for so long.....my weakness. I have spent the afternoon cutting they boys hair the best I can and now I its time to get them some dinner. So I will share my MUFTI BOWLS DAY adventure with you after the event.