This started 1 year ago today

The long journey i have been on with this headache stared 1 year ago. I remember waking up after orbital decompression with a massive headache and not being able to taste anything.

My life has been changed so drastically in one year it gets me angry and ticked off at everything I have been through. A simple surgery gone wrong. Period point blank.

If I have learned anything in this past year it is:

Life should not never ever be taken for granted. If I knew then what I know now…

Family will always be there when everything else is falling apart. My family is the best. They know my speech issues, they tell me not to be embarrassed when I have a speech pause are just plane forget what I was talking about. They understand my sight issues and warn me of obstacles approaching. Now if I could just get the 2 yo nephew to just stay on my left side instead of my right side when i am in charge of him at the local kids pizza buffet and game center. that little angle is quick and can change directions on a dime, my life would be great.

Your husband/wife is not a servant. I have to remind myself. If I placed that item “there”, don’t expect that he is going to put it in its right location. Just because you are overwhelmed with your situation does not allow you to take for granted that significant other.

Everyone else’s life will continue as they know it, only yours has changed. Try not to burden them with your issues. They will keep their appointments, vacations, weddings. Because of your situation you can not attend, do or be active with them, fly etc…That is not their fault. Don’t get down on them for living their life. This is your path you are going down, they have their own to worry about.

Be persistent with your doctors if you truly believe there is an issue. My original surgeon would not listen to me that there was an issue. With symptoms not going away even though the surgery site was healed. You are the only one who knows what is right and what is wrong when there are surgical complications. Now if I can get my brain surgeons to listen to me an fix my current situation of a continued CSF leak life would be perfect.

Learn how to get along with your situation. For me that is being blind on the right side. Speech issues, reading comprehension. Not seeing the world as everyone else does. No depth perception. I live in a 3D world but only have 2D vision.

The other thing I have learned that this one surgery, has now made my medical history sheet that you fill out with a new doc, an extremely long list. To the point it is almost embarrassing to make all of those check marks for so done who is only 49.

Have a appointment with Dr B next week so that is all I have right now. Have a great weekend.


About Just Jules

USCG Vet, wife, daughter, recently blimded in one eye from brain surgery, using my passion for 3Gun as my rehab.
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13 Responses to This started 1 year ago today

  1. Cat says:

    HUGS Jules. So sorry for all you have been through. I have no doubt you have helped more people than you know with this blog.

  2. little old me says:

    hi im new to the site but by reading some of the posts its helped me understand things a bit better i had a bad head injury 7 years ago now wich caused an abcsess in my head leading to me needing a craniotomy and even 7 years later i still strugle with day to day things and the headaches are un real my memory is no where near what it used to be i cant read books because i cant take the story in and i get so many bad mood swings i was just wondering if anyone else has temper problems due to there op ?

    • Just Jules says:

      Thanks for the comment. I am glad to hear that this might help someone else out. Wow maybe you should be helping me you have 6 more years of this crap than I do. Anyways. I do get a temper when I am having speech issues. I use to be very verbal now I prefer to let others speak because of the pausing issues. I also get a temper when things are not going as I expect them. Never had this before surgery. I was trained in the military to hide my emotions so I am good at that in public. The hubs gets the bad end of the stick when not one is around.

      I miss reading and knowing and remembering a story line. I was in the process of writing a book before all this crap started. Now it is gathering dust. I have not imagination or verbal skills. It sucks.

      Just knowing there are others out there going through this with me helps. Doctors only fix the immediate issue and don’t know what to do with the aftermath, except here take this pill and see if this works.

  3. little old me says:

    my speach is still a bit of at times but some days i can talk normal and my memory is that of a goldfish now (lol) its just the constant pain that bothers me mostly my head hurts every day but some days im actually floored because of pain i have been on all different meds to see if it helps but the ones that helped that slite little bit my doc took me of them due to them being highly addictive i am also on pills for epilepsy for rest of my life due to the injury i just feel i get more of an explanation from the likes of yourself rather than the doctors because you are suffering similar things when it did hapen the first few years where alot worse than now as i had to stay in hospital for 3 month and learn to basically walk and talk again and loads of other problems came along with it even after 7 years i still strugle with day to day life and only explanation the neuroscientist can give me is i have nerve damage and a rare form of migrane which no offence to him but i know it aint a migrane and says my temper and anxiety is due to pts you are the first person i have spoken to that has had similar effects i know what you mean by hiding your emotions i strugle so much sometimes i wish i just died rather than the op but i put a brave face on for my partner and 3 kids and im gratefull you took the time to read and reply to my post the only advice i could give to anyone in this type of situation is keep fighting and dont give up and i hope you can eventually 1 day finish writing your book thank you so much for your post its good to know im not the only 1 who feels this way …ps sorry for the grammer and spelling another thing i am still finding hard

    • Just Jules says:

      Doug. Lol never feel sorry for the blips of bad spelling and English mishaps. That is my new world. Actually knew what you were saying. Lol. Yes it does help knowing we are not alone. I figure since we are running this path IMO god is not ready for us yet. He still have plans for us. Whether it is for you kids and partner, showing me the future, or who knows what.

      I know for a fact there are a few times in my 49 years I should have been DEAD. However I came out with out a scratch. So I figure its not my time yet. There must be something I am suppose to LEARN from THIS experience. Just not too sure that that is yet. I am a little daft now that I have been through this. Lol

      I have a nephew who choose the wrong path in life there have been 3 times his heart has stopped because of his drug abuse. Each time he should have been dead. Each time he woke up. He has a very hard road to live which he is finally trying to change. But like I said before there must be a reason why he is live instead of dead. IMO god does work in mysterious ways.

      Please try to find the good in your everyday life.

      The headaches OMgosh those suck. I tried to go yesterday with out any pain Meds. Talk about the worse night ever. I finally gave in at midnight took a large dose and it took 4 hours before I was finally feeling it less. I do t understand why docs say you can’t take what helps you because of this or that. If it is used sparingly and not abused why should they care? Migraines yea one doc tried to pull that on me. I have never had them and I still don’t. Mine are directly related to this surgery and crap I’m going through.

      Anyways. Say In touch. Together we might just figure out what helps the headaches, speech and memory issues. I have a mental eval this week that should be interesting. My surgeon who is becoming a personal friend to the hubs and I was rubbing his hands with a devious looks saying jokingly “I want to be a fly on the wall for this test” lol. I don’t mesh my words when only a hard expletive will work I use it. Like the f bomb it should be interesting.

      Take care. I hope you find joy and encouragement in yours life.

    • Just Jules says:

      Grammar smammer we understand here believe me. Hope you are doing well and getting ready for spring.

      • little old me says:

        hi jules doing not to bad same s**t diff day i supose eventually told doc to take me of all meds other than epilepsy as i feel im geting worse rather than better anyway hope your keeping well and not giving up take care and dont give up

      • Just Jules says:

        Thanks for the update. Yes same sh*t different day. Good luck with the med change.

        I know what you mean about going backwards it sucks. Keep up the good fight we are all in this together.

  4. Anonymous says:

    hi jules just thought i would pop in to see how you are getting on? hope all is well and going good for you

    • Just Jules says:

      Still here, trucking along. Went on my first vacation since surgery this weekend. Went jet skiing and hung out with friends and family at the river. Had such a great time did not want to leave. I’m paying for t now though.

  5. Anonymous says:

    thats great your doing these things again go you! i hope you enjoyed it sometimes its worth taking the pain just to have that sense of freedom and enjoyment again i try get out on my dirt bike and do some tracks or trails as often as i can as i love the sport with a passion but floors me for about a week at a time afterwards anyway jules good to hear your ok and keep pushing forward buddy tc and keep in touch

    • Just Jules says:

      Thanks, ohhh dirt bikes and tricks. Love doing those. My body is getting to creaky to do that though. Thanks for the encouragement

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