Helllooooo guys,
I am sorry that I have once again left it a while. So much has happened, unfortunately, primarily bad.
Last time I updated you all, I had just come back from holiday and was a day or so into my new job. The new job has been going really well. Now that I am taking all the information in rather than having it make my head spin that is anyway. I get on well with everyone else on the reception and am managing to guard the phones, answer the emails and check people in and out all at the same time... who'd have thunk it. It has been such a nice change to making people coffee all day everyday after 4 years. Fingers crossed it all stays that way :).
Just after I came back from America, I was given another medication to once again, add on and see how it goes. As usual, I was started on such a low dose it couldn't really even be classed as a dose. All was ok for the first 5-7 days with no side effects good or bad. The dose was doubled and so were the problems. True to my normal body reactions, me and the new medication which was called Levetiracetam, did not get on and reacted badly to one another. Be it to another medication I am on or the medication itself, we do not know. Either way... it's another one down. It was messing with my mind and my body increasing the pain. Fear not, I have stopped it and won't be going back on it any time soon. I have however had enough of trying medication after medication and being stuck in this same cycle over and over of being thrown a new medication to stick down my body and pray for results. Often, being disappointed yet again along with suffering the consequences and side effects. NOT COOL!! I don't really know what the other options are to be honest but my feelings will be made very clear to my pain specialist when I next see him. How long am I seriously expected to just keep trying medication after medication in the hope that the next one is the one to work? How long am I expected to just suffer the side effects and end up worse? How long could you do it for? It's making me feel so down being in this cycle with no-one able to help and do anything about it besides sit there and tell you "It will get easier". Will it though? Will it really? I'm so fed up and just feel like completely giving up. How many times should I just sit there and pray someone comes across some amazing new thing that is going to cure or help me and many other Gastroparesis sufferers? It's easy for you to say "it will get better" or "you never know what doctors will find''... it's a whole other game to be the one to have to listen to it and just accept it.
People are dying every day due to conditions, and unfortunately, this one included. So many people who were fighting Gastroparesis have lost their lives this year already. One of my good friends lost her battle yesterday. She was similar age to me and such an amazing, strong & brave young woman. Way too young to lose her life but yet she did. It is SOO scary but it is true and real and happening! There is such little research being done on Gastroparesis because it is not as known as cancer may be, but it doesn't make it any less fatal. They both can lead to the same ending! Yet, why is it, people are more understanding or willing to spend money to research into someone who has cancer. I have nothing but the up most respect for those suffering or who have suffered from cancer along with their friends & families. I know what it is like as 4 years ago my Grandma died from cancer. So many people with Gastroparesis are either ignored by professionals or denied treatment because it is simply to expensive or there isn't any due to lack or research. What about any of that is fair or anywhere near acceptable? I know there are thousands of other health conditions that don't have the research done for them too but right now, all I can focus on is the one that is basically killing me. Lets face it, without my tube.... I would certainly be in hospital close to dead if not already by now. It's horrible to say but it's the truth. I can't keep going round and round like this for 30/40/50 years.... would you?
Just before I go for today, I want to say R.I.P to my friend and fellow Gastroparesis sufferer Lucy Hanson. You will never be forgotten and hugely missed. My thoughts and prayers are with her family at this hard time. She was an amazing, brave young lady who is loved by many!! Another person to have received their wings far to young <3
Have a good day everyone.
Stay Strong
<3
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