Update long post Sorry!

So we are about eight weeks into 2020. Out of those eight weeks there was one week where I didn’t have an outpatients appointment, physio appointment, GP visit. What a life! 
So at the beginning of January I finally met with the cardiologist about the hole in my heart that was discovered when I had my stroke. It was one of the most frustrating appointments I have ever had because we were left waiting for an hour in the exam room while the Doctor Who was the grouchiest doctor I think I’ve ever met to go and talk to the main consultant. In fact pissed me off so much that I have made a complaint. I have 25 years of experience of these kind of appointments and I have never felt like I was taking up somebody’s time or so unimportant as I did with this.  
Anyway the outcome was they are not going to close the hole in my heart. When I had the stroke there was a random clot in my aorta and they have no idea why it was there how it got there and they haven’t seen it before. Typical me. They said all of the other blood vessels including that are completely clear apart from that one clot so it is very odd. They are assuming that being on the blood thinners for eight months means the clot has disintegrated. I hope so! 
Another appointment I had was with my rheumatologist and I finally got confirmation of my ReynaudsThey spoke about putting me on meds but I said I didn’t want to maybe I will at some point in the future but for now I’m coping. They also found it really unusual how I developed Reynauds, Which I did after taking folic acid. Again to typical me! 
I also had an appointment with my pain specialist who I am seeing privately. I officially give up on low dose naltrexone After about 18 months of being on it. It was something I was trying for my fibromyalgia and didn’t help a bit other than to take A couple of grand out of my pocket. 
However one good thing did come out of that I finally was approved for the lidocaine patches/Versatis On my medical card. They had been available on medical card up to a year and a half ago and then the government change their mind because they are €25 for a pack of five. As I have Crohn’s disease I had found these really helpful in the past because I cannot take strong painkillers. That wasn’t enough to get them reinstated for me however the pain specialist told them in a letter that I was experiencing neurological pain since my stroke and thankfully they are now reinstated all I need now is a prescription from my GP. 
I also saw my haematologist about all the tests they did when I was in hospital after the stroke trying to figure out why it happened when I had no reason for it to well all my test came back negative bar one for a lupus coagulant gene or something. They said it could’ve been affected by the meds I was on so I can’t be retested at the minute. 
Today I saw my gastro re my crohns and they werent happy i refused to have a colonscope but bugger that! I am fine Ive no symptoms OR any elevation in my inflammatory markers.
 Now for my favourite appointment! I saw my neurologist but before I met him I had to meet with a neurological nurse to go to everything first. He was shocked about the stroke but informed me about a new medication the first medication to be made specifically for migraine. He told me it was an injection you do once a month and that people who have not had any luck with all the medication has had quite a bit of luck with that oneTo say I was excited is an understatement, I have a migraine 24 hours a day seven days a week the level of that migraine waxes and wanes but it is always there. Any other medication I have tried hasn’t worked and none were made specifically for migraine they are either blood pressure medication or antiseizure medication. 
When he went to get the neurologist and told him about my Stroke The neurologist said I couldn’t take it because it is only a new medication and there isn’t enough known about it yet. There goes my little ray of hope. He then mentioned Botox injections which I had asked about before. He explained it is about 30 injections into your scalp but then realised with the blood thinners I couldn’t have that done either. He then mentioned another medication but after a couple of minutes telling me about iT he asked me if I was going to have kids. No I decided when I was 11 years old that I didn’t want any kids. I asked my GP to be sterilised when I was 21 but wasn’t allowed to encase I met a man who want to children! When I said to the neurologist I don’t want to children he said I would have to get a coil fitted if I want to try that medication. Now call me crazy but is my Word not good enough? It really pissed me off. Even if I wanted to have children I can’t on the medication I’m on already, so why am I being denied this. It didn’t matter what I said they won’t talk to me about it on less I have a coil fitted. So fuck that. Finally they mentioned an injection into the muscle at the back of my head where my neck joins my head that some people have found helpful so we will see they are going to contact the company who make the new medication to see if there are any research done on the stroke survivors taking it but I dont hold out any hope there. 
I am waiting on an appointment with some counselors as I finding it hard to pull myself out of my blackness since the stroke so hope that happens soon.
Next Monday, in 5 days, I have my stent surgery. The same surgery that I suffered a stroke after last time. I am in alot of pain with it, I cant walk the dog, get around tesco etc however I am terrified. I know there is a tiny chance of having another stroke now i am on blood thinners but the chances of me having the stroke last time was 0.04%-0.8% so it doesnt fill me with hope I wont stroke out again. All I can do is cross my fingers. 
Please let this be free of stent time. Its been 11 months almost living with this damn thing scratching in my bladder causing constant pain and complete agony when I pee which I do two times an hour at least. So if you are reading this please keep me in your thoughts. X


           

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