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Ponigirl last won the day on February 16 2015

Ponigirl had the most liked content!

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45 Excellent

About Ponigirl

  • Rank
    New Member
  • Birthday 02/09/1963

Profile Information

  • Gender
  • Location
    New Oxford, PA
  • Interests
    Animals, my pets. I love hiking- just walking trails in the wilderness with my husband and dogs.


  • Location
    Baltimore, MD
  • Interests
    my pets- dogs
  • Occupation
    Humane Society of the US
  • SAH/Stroke Date
    SAH 1/15/2013

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  1. I'm so very sorry for what you are going through. Since I'm in the USA (and have problems understanding things) I don't totally understand the issues you've mentioned. But I can tell you I've heard horror stories of how USA companies have treated their employees after a brain injury. I actually worked for The HUMANE Society of the United States (HSUS) and when I returned to work they put me into a brand new position- one that I had NEVER done before and then they were shocked when I couldn't do it!! I pretty much failed my neurhphysc eval and thats when I decided I could not take the stress that HSUS was putting on me. I left. I pray you get what you want and deserve out of your job.
  2. I too had NASAH and now my life is different. I describe it as before and after. I explain it as my brain just exploded. This is my "new" normal. I would suggest getting a neuro-physc evaluation (sorry lost my ability to spell). It helped me and it was not suggested by y neurosurgeron until I kept complaining about my memory and just not feeling right. This is the BEST sight for ideas, help and support!!! You can ask anything and usually someone here has been through it or has suggestions. Have you been to see your neuro yet? I wish you the best of luck.
  3. Ponigirl

    Holly - My Story

    Holly your story is similar to mine. I was working from home (alone) when the worst headache I've ever had (and I've had plenty) but this one was so different. Sounds were different- almost muttled, colors were not the same. Then within minutes of the headache I started to violently throw up and could not stop. Long story short I was found to have a Non Aneurysm Subarachnoid Hemorrhage. Spent the next 2 weeks in ICU (no memory of any of it at all), then to rehab for a few days. Stayed home for 3 months. Tried to return to work- after a few months of that I realized I could not remember anything that I could before- asked my neurosurgeion about it and THEN he ordered a neuro-physc evaluation. I pretty much failed it terribly. I was told that I was not capable of working and should be on full term disabiltiy. So my life has drasically changed. I do wish you the best.
  4. Hey there Mandie- I'm so sorry to have to meet you under these circumstances. I live in PA- near Gettysburg. I suffered a SAH, I had a bleed that University of MD (lived in MD at that time) never found the source. My bleed was no where near as bad as yours. Like you I had depression. I think mine was partly from realizing what I was no longer capible of doing (HA- like spelling!!!). I'm 2 years out and am still suffering from the depression and that is with medication! We all have different problems and deal with them in our own ways. I do pray you get the help you need to help deal with the depression. Do you go to a support group? Are you seeing anyone that you can mention the depression? You don't need to respond to any of my questions. I will keep you in my thoughts and prayers. Best of luck!!
  5. I had my non aneurysmal subarachnoid hemorrhage just over 2 years ago when I was 49. OK- I need to back a little- when I was 7 years old had eye surgery at Johns Hopkins Wilmer Eye Clinic for lazy eye. On a rare occasion when i would get tired my "lazy" eye would tend to go in towards my nose. My husband was the only one that would notice this because it was not very noticeable. However, even before I got out of ICU several doctors would ask Bob- "has her eye always been like that?" and even still when I go to doctors it is asked. We went to Johns Hopkins Wilmer Eye Clinic after I got out of rehab (they still had my "old" records) and we took my records from University of MD. They did all kinds of test and were sure I should have double vision. They told us that because of the scar tissue from my very first eye surgery that it prevented me from having double vision. How weird is that!!?? Right?? So fast forward 2 years. I recently started having vision problems- nothing like double vision, just very fuzzy, but not all the time. We will be making an appointment at Johns Hopkins Wilmer Eye Clinic as soon as we can. We are in the middle of selling our house and moving out and will not be buying or moving into another house right away. So things will be hectic for the next several months. This will be stressful and I don't handle stress like I used to. I was just wondering if anyone else had an eye/vision issues as a result of SAH or after?? Thanks, Ponigirl
  6. I actually started laughing when you mentioned sneezing. The reason it is so funny to me is because when I had my non aneurysmal subarachnoid hemorrhage I was working from home on my laptop and felt like I was going to sneeze and got up to blow my nose- when I did my brain exploded!! I got very dizzy- couldn't stand up- felt like I was going to pass out- then started throwing up violently!! I knew I was in very bad shape and this was not normal. I didn't have a smartphone back then and I thank God I didn't, I never would have been able to figure out how to make a phone call. I had my husband on speed dial and only had to (flip) open my phone and press 1 and my wonderful hubby answered right away. There were several things that happened that morning that would have made a difference of life and death. Bob was able to get me to our local hospital and an awesome doctor over heard Bob telling the receptionist what happened and he ordered a CT scan immediately. I was sent to ICU for 2 weeks then a short stint at a rehab center. I had just turned 49. This was in Jan. 2013 and I have no memory of Dec. 2012-March 2013. I've lost my ability to do many things I used to be able to do. I'm sure my age is not in my favor. I do pray for all of us with a brain injury. We have a tough road ahead of us. Some of us are lucky to have a good support system, me included. Unlike you- I never thought to look for any kind of help- I wish I had. I didn't find this wonderful group until I was well into my first year. I wish you the very best!!
  7. Sammy- wow, what a story!!! a little similar to mine- except that I had a bleed instead of an anurisim (sorry I can't spell anymore) and I didn't have operations like you- yours sounds much worse. Your little angel was your life saver!! That is awesome. I had several things that happened to me the morning I had mine and any one of them eaisly could have made the difference in life or death. I am just 2 years out and it has been a tough road. I wish you and everyone with a brain injury all the best in the world. prayers to you!!
  8. I totally understand you being upset and worried. When I needed to have my gall bladder removed I was told Johns Hopkins was doing an experimental procedure to remove it laperscoply (sorry for the bad spelling- it is a result of my SAH) and I met the requirements. I was nervous and went for it. Now it is common practice to do it laperscoply. I know this is in no way a comparison to your brain surgery. Is there any way you could email or talk to some of the others that had this surgery? I know that is a long shot- but if you could would that help you? Talking to your family will help you decide. I will pray for you and that you come to the right decision for you.
  9. My sleep is terrible!! I had a hard time getting to sleep- then after I would get to sleep I would wake up every 1 to 2 hours and just toss and turn. My doc added an antidepressant that would help me sleep- even though that is not what it is for- just an added benefit. I have heard/read that sleep is very important to well being and the brain really needs it. I hope you get to check with your doc and he/she can help you. Best of luck
  10. Teechur- Just my opinion but I would definitely go back and ask to see her, not the PA. If you can take any proof that you are abiding by what she/they are asking of you. Maybe receipts for the meds or a log at a gym, I don't know be creative. And just ask her straight out why is she dropping you after 1 year when she said it may take 2 years? One other thing you may want to check is- can you get a copy of your medical file they have on you. The reason I mention this is because in the US some medical places are getting into "portals" that the records go into and then the patient can log in and review stuff, likes meds, appts, and records. When I was reading thru one of mine it had that I was a smoker and drank caffiene on a regular schedule and both couldn't be farther from the truth. So the next time I was in the office I asked them to correct that. So I'm just wondering if there is something in your file that may be incorrect. It may be worth looking into. So sorry to hear about the headaches!! I only suffered from migraines before my brain bleed, and still do- but also have these "other" headaches. I'd rather just have my migraines, I have meds that work for them. These other headaches not much works on them. I am seeing someone for that and we are working it. I wish you the best of luck. Let us know how it works out. Iola- I've heard that it is common to get headaches on "days off" or weekends and they could be from going "off" schedule. Say during the week you get up at 7am have coffee, breakfast and go to work. Then on the weekend you sleep in until 9am and skip breakfast. I've heard to try to always stay on the same sleeping and eating schedule. Worth a try. Wish you the best.
  11. Iola- Wow!!! You have been thru so much! I know that it is worse not knowing- sitting and waiting. I feel for you! I am praying that you will get the good news and soon! It is hard but try to keep your thoughts on something else. You certainly don't have very good family history. My husband, Bob lost his grandfather to lung cancer before I met him. After we were together for a few years he just turned 40 and lost both of his parents to lung cancer, then to make it worse he lost his grandmother all within 2 years and he is/was an only child. So because of his family history he is very good about going to the docs, getting blood work or whatever tests done. He's had skin cancer twice, but they caught it early enough. So please do the same and go to the docs early and often. It does pay off. You want to be there to see your daughter grow up, graduate, get married, have kids and be the amazing mom that you are!! Please keep us up to date on your test results. I will be thinking of you and praying extra!!
  12. Liz- I can't thank you enough for putting the definition in plain english that I could understand very easily!!! Knowing that makes me understand what I had was clearly a NASAH because I asked my nuerologist recently where my bleed was and she confirmed exactly what my neurosurgeon told me- and that was my bleed was all over my brain- not in just one or two areas but the entire brain. I didn't understand it when they told me, until I read your description. Thank you VERY much!!! Kris- I have problems in many areas- from long and short term memory, asphia (speaking problems), getting lost (driving)- so I don't drive by myself anymore, I can't use computers- like I used to, no comprending, I have a really hard time looking at something - like on a piece of paper and then copy it onto another piece of paper (not sure if that is clear), my vision has really been affected, and there is other stuff but this is what I can think of right now. I'm not sure if this makes a difference as far as receovery or what parts of the brain are affected- but the blood that was in my brain area was making my brain swell (or something like that- I'm not really sure) so the doc had to drill a hole in my skull to drain the excess blood out. and there was a lot of it!! I have no memory of my time in ICU or for months before or after my bleed. Thank you for your input, Ponigirl
  13. Sharlua- have you gone to the support group yet? If so how did it go? I found BTG over a year after my brain bleed and I wish I had found it much sooner. Everyone here has been a huge help. I was not emotional right after my bleed, it was not until I returned to work and was transferred out of my position (that I LOVED!!!!) and I was so very stressed about the new position- because I had never done anything like this before and then I would cry over everything. I think the stress at work was a huge contributor! Because I was not depressed until all this stuff at work happened. I did read and find out that it is very common/normal for people with a brain injury to be very emotional. If you have any questions here is the place to ask. I'm so sorry for what you are going through. The first year is very tough- but it will get better. Wishing you the best!!! Ponigirl
  14. ‚ÄčIt is so nice to know that others suffer from dizziness, because I do. At least now I know not to expect it to go away. My balance is pretty bad. I wish the USA had better control over people with a brain injury and their drivers license. When I was released my husband did inquire about me driving and they said we didn't need to report anything to DMV (Department of Motor Vehicles) unless we wanted to!! Same with my brother-in-law and his TBI was caused by a very bad car accident and he was the only vehicle involved and it was never determined why or what caused the accident. He has epilipsy and I would think that could have caused the accident if he started having a seizure while driving. Yet he never had to check in with DMV!!! Jillbb- let us know when you go to the docs to have the chest issue checked out. If it is something like high blood pressure you need to get on medication as soon as you can. High BP is nothing to mess around with and it can be kept under control easily with meds. Best of luck!!
  15. I can't tell everyone here how much you help me!! I really wish I had found BTG 2 years ago. It makes me feel SO much better when I read what someone here writes and it is exactly what I think, feel or have said before. When someone is realeased from the hospital or rehab after a brain injury it would be so helpful to be suggested or told about this site. I know for me when I came home I felt very lost and was not sure what to do. Then when the doc released me with out any information or anything about a NASAH. I am going to look into doing something about this from the hospital I was in. Thank you all SO very much for all your help, support and most of all encouragement!!!
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