Today's adventures

I am telling you I went to what I thought was my neurology appointment with a neurologist.  Oh no! It was so much more than that.  He has too many degrees, and this  is coming from one who has 4 of my own!  

I really liked him though, very thorough and easy to talk to.  Although I did most of the talking.  I think it was more of a "lets make sure he is not crazy" appointment at first.

Why do I go to a neurologist in the fist place?  Because I have lupus and I have lesions on my brain, and they have to perform CT scans of my brain every so often to be sure they are not growing, getting worse or moving around in my head.  It is a thing I have to do, but you have to have a neurologist in order to have the test done, and mine died last year so I had to find a new one.  It was a long appointment.

OH I AM NOT CRAZY as everyone thought either.  I was told today I do have a bit of dementia (medication induced) which will go away once these meds are stopped. Thank GOD I am NOT losing my mind as I thought. {Verified by a Neuropsychiatrist 04/02/2019}. 

What led to me thinking I was losing my mind, because I was not able to remember shit most days, or I would be talking and forget the words I wanted to say or sentences would come out backwards.  I only talk to a couple people on a regular basis daily, and they both tell me "that made no sense", and ask if I am having a bad day.  I do not always realize it; until someone points it out to me. It is really a form of brain fog.  I will be writing on that this week as it is very important to understand and realize it can kill your quilting mojo!

I want to create on days and I can not which is part of the above mentioned paragraph.  I just have no energy or I just can not put things together in my head that make sense.  I CAN NOT follow a written pattern to save my life, they are Algebra to me, and I HATE Algebra! You may read me saying "techtarded" please don't take offense it is the term I use when I can not figure out a device or new technology.  I suck at that.  I have EQ7 and am still learning it after a 18 month ownership of the thing, it is really cool and does let me create in virtual form and then I can translate it to my pattern I want to make.  I have not taken time to delve back into it for a while - I need too...

Hell half the time my phone is foreign to me, I have no idea how Iphones work at all.  I have android cheap and easy to use, no not a flip phone either.  I just don't use my phone as a way of life, it is for calling and talking and if I need help i.e. 911.  So nope don't really care about the latest and greatest phones or devices they are not for me and I refuse to learn them unless I have to because I had to replace my phone currently mine is 5 years old maybe older. 

So back to today - Very interesting.  I have to go for a CT angiogram of my head on May 14th I think, to see what is or isn't up there!  We will see how many doors have locks or broken locks and just how many memory boxes have fallen over molded and are no longer viable is how I look at it!  Basically at the moment I am on "bed rest" which just means take it really easy and don't over do it until we see if I might have an aneurysm which may explain all the headaches I have had over the last months I have blamed on stress and medication changes.  But do some of the answers today, it was concerning to the doctors as well as myself this has not gotten better over time! I thought it would.  I start a new medication for stress and sleeping tomorrow I have to go pick it up.  We will see.  I forgot the name of it already.

I am trying to get myself out more than I used to be, but truthfully this last surgery did kick my ass and it's taking longer than the one in October 2018 to recover.  So I am slow and I am just tired most days.  That is how it is for now.  It is my life. 

Hmmmm T.V. show name  "It is my life"...  where the hell is TLC when you need them my life is more interesting than the Karkrackians or Sister wives - ohhhhh don't get me started on sister wives.  I will blog on that when I am not in the mood I am in today.  I just can not stand stupid stuff on t.v., nor can I deal with chosen ignorance to be cute.  UGH. 

Okay, so it was good doctor appointment over an hour with me was nice to have, and I was able to  tell my story since it is mine and they did not go from Notes of past doctor appointments, I started over and had to answer all the questions - that is important to me as we change every day and the changes become long term or they go away and new things come up.  It is important to have yearly head to toe assessments.  Your doctor knows what it is, but when you make your yearly follow up say head to toe assessment is the reason you are going so they can schedule the time it takes, they are not going to say it is time for that at any point, it is up to you to make it happen.  Otherwise they go from that initial one done when you first saw your doctors!!  NEWS FLASH - ADVOCATE FOR YOURSELF!

Okay, for now I am done with my rant and information session.  Truthfully I will write more tonight and tomorrow and then some more after that, basically you are going on a journey with me, and I had added pages so you can tell me about you, what you deal with what you are trying to figure out and also my creations through this roller coaster so far. 

Thanks for reading and taking time to say hello when you can.  Click the subscribe button up top and you will get emails of new post!

T



Comments

  1. Im so sorry you are going through all of this. I have lupus as well, my doc says it's mild, to me its not, because it has changed me. I think the brain fog is the worst. People laugh at some of the things I say, but I don't advertise my personal history. Stay strong my friend. You have many people pulling for you!

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  2. I'm so sorry to hear of all your problems. I do have to say you have a good outlook and you still joke around, hang in there one day at a time. I retired in April of 2016, moved to Florida, we have had this place since 2004, with the intentions of retiring here and so we did. Well I needed new glasses so long story short the dr. told me he couldn't give me a new prescription. He also said I needed Catarac surgery, which I had in Oct. 2017 each eye a week apart. Well after that for about a year I had a hard time seeing my eyes were not the same. My eyes were always tired and I kept seeing dark half circle lines in my peripheral vision. Of course no one had an answer for me. Even did laser treatment to clean up my lenses. Well after the catarc surgery I developed wet Macular degeneration. I swear I think this is nothing but a business down here in Florida. There are so many eye care centers her it is unbelievable. I really think this is a racket. I have been getting injections in my left eye for 1 1/2 years already. The medication was Avastin. In Maryland a law firm has filed a class action law suit against the pharmacy that packaged the medication in silicone coated syringes not appropriate for use in eye injections. Therefore some of the silicone particles will then detach and mix with whatever liquid is in the syringe and goes into the eye and floats around in the patients line of sight. This is what I am dealing with now. I don't need to go blind now they switched my medicine to something else which I don't remember the name. But even this medicine I get floaters and string like floaters with little beads on them. I go every 4 weeks for an injection. I'm getting tired of it. But in that waiting room there are so many people getting the same thing some in both eyes. I swear I really think it is a racket and it is like that in all the eye care centers here. I everyone going blind here or what. Bottom line I am not happy with my eyes. Well that is my gripe. Teddy you have a lot more going on and I sincerly wish you the best. Praying for you.

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