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The Good, the Bad and the Ugly


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Hello all:

Did the catchy title get ya? Well, I spent my Monday holiday on the phone with doctors becasue thats what us SAH'ers do on our day off isnt it? Would like to share my fun:

The Good- All my tests came back good, blood and brain. I've lost 7 lbs in the last month (no cake Win) and 24lbs since last year. Doc gave me Inderal in case I have a BP attack again. My GP was nice and helpful.

The Bad- Had appt with GP on Tuesday. Thinks my BP rise was isolated and doesnt think I need BP meds. I mentioned SAH and he said "that is in the past" meaning SAH. Then he said, "no worries, the SAH is over with now". Well slap my back and call me Charlie! Thats it, once the SAH is over we have no other worries about our health. We're cured! Didnt you guys at BTG know that? I didnt bother to tell him about my headaches fatigue as that is just "in my head". He is a good guy but obviously knows not much about the SAH.

The Ugly- Called my neurosurgeon to see if they could get me in to try again a NEW NEUROLOGIST #3 sooner as worried about BP, health, working myself to death, those little things. Called Neurologist back and spoke to a nurse/receptionist. She said yes other doctor called and they could get me in Sept 25 th instead of Oct 1st. Gee thanks, a whole week sooner. I asked if I could get in sooner and she said "We're already getting you in sooner, whats the problem?". I said the problem is my BP just rose last week to near death levels and I'd like to get in sooner.

Ready for this: She said "Well, we all could die in a month too". I just lost it and hung up on her. I walked outside and took a few deep breaths. 20 minutes later, I called back and asked to speak to the nurse supervisor and asked if this is how they talk to their patients. She said no and apologized. I got the nurses name.

I got an appt for Oct 2nd Yay! The only reason why I'm going to this DR is they are two minutes from my work and she is supposed to be good. I can make appts at lunch or after work. I will be speaking to the nurse when I come in to my appointment and ask her if she died this month casue she said she could have. I will also ask her if she has a brain injury.

Bottom line: I'm not giving up but the neuros in the US are unreal and some are just in it for the money. Is there no aftercare whatsoever for SAH er's ?????????????

David

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Hi David,

Good to hear that your GP is aware of the 3 main causes of SAH - high blood pressure!!!!, smoking & excessive alcohol. So your SAH is 'in the past'.......:roll:

Well done on ringing back the secretary and asking for someone senior. This is what I always do now as life is just too short to get angry & do battle with the uninformed. Another favourite of mine is to point out that without people like myself needing help THEY would not actually have a job.......just a thought, works at the Job Centre too in case anyone feels the need to use it there :lol:

Hope the appointment goes well, keep smiling :-D

Michelle x

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:devil:Well Davey, I am glad you are not given up. I after having a month of thinking about my 2nd neurologist and reading more about chronic fatigue I am a bit more understanding. I wanted answers for WHY I was sick prior to SAH. I mean just as tired as now. And he was truly following up on that but was not sharing what he was thinking. I was afraid they were missing some big clue. I get it know that he is doing the follow through on the follow up I requested.

I have the inconsistent blood pressure but not like yours. YIKES! I just want answers to being so tired and headaches. I cannot tell you how disappointed I am that they are backkkkkk! What happen to the Sept appt? Did you lose out when you hung up?? Did the weekend knock you on your hiney?

(Noun 1. buttocks - the fleshy part of the human body that you sit on; "he deserves a good kick in the butt"; "are you going to sit on your fanny and do nothing?"

****, ass, behind, buns, derriere, fanny, hind end, hindquarters, keister, nates, posterior, prat, rear end, tooshie, tush, seat, fundament, backside, bottom, stern, rump, tail end, tail, rear, bum, butt, can

body part - any part of an organism such as an organ or extremity

torso, trunk, body - the body excluding the head and neck and limbs; "they moved their arms and legs and bodies") Never say Fanny in here.

There is no excuse for the way that nurse treated you. My husband wrote my Neuro surgeon a letter about the way we were treated and left us uninformed as was the nurse that they nick my artery during the angiogram. I came back into the room repeating the same 3 sentences over and over. I think although we were treated fine he after that he knew we weren’t going to settle for less than quality care. It made a difference that we were not jerks but that it was stated in letter as a "would have been professional if we were told"... ASAP. After that we had a new understanding and he took all the time in the world for me.

I feel I am going to work myself to death as well. I have no answer there. I have no idea what choices are even out there. I had such a light bulb moment about the ADHD medication my GP gave me last summer b4 SAH, stroke, yada yada yada……. My GP is on vacation (I know because his dog is at my clinic boarding). But since the neruo said he was going to try it anyway I thought what the heck the next few days. I certainly could concentrate better and get things done but it is short lived and I am only taking ¼ the dose. CHICKEN that I am, even though I was on more medication last summer than now. I am desperate to move on. I just want some normalcy in my life back. It feels so good to have a good day. I would be happy for 2 a week. Bargaining phase?

Do you think that neuros don’t discuss for fear of being sued? I have no idea? But geez, if the community of Neuros does not know the answer that is fine with me just say so. That would make me feel better than thinking I was crazy. I have to say the psyche evel was well worth it. To talk to the physiologist was the best ever! Just to be validated for my fears, concerns etc.

Good Luck Buddy Boy!

MaryB

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You know ONE more thing. IN my job, we remind staff all the time that that client loves their pet & it is one of her most cherished things in her life. Even if it wants to bite us every time we look at it. We are reminded that some people have an abnormal attachment to their pet for various reasons- may of been the sons cat and the son committed sucide, or that the animal was there for them through years of chemo etc..that they have no friends, ...... Really do human practices not have these conversations?

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Had. Good luck David. MY GP said I have only ever had one SAH iin all my years of practising, I am very surprised you have had one, first a d. last time I go there! I was discharged after my 6 week appoint ment aadmittedly. I had not fou d this web site, I did not know what to expect as the hospital told me nothing except to expect memory loss and that I probably never be able to do the things I did previously, bit depressing. However where I. Live everybody seems to have forgotten I had an SAH. They afe mlre con er ed about my broken

Leg and inability to drive.. so I cant be at every ones beck and call. Just had 3 lovely. days in COrnwall went on day trip to scilly Isles, hardwork in a wheel chair poor husband had to push me round ST Mary,s. as cant put my foot to the ground! Magical ISlands.

Love Jill

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Man in Nurses uniform runs amok on line , Read All About it .Man told he is better

Win reads paper David has made headlines again Yay!

Hums tune to Good Bad and Ugly.

Glad you are all better David , she says in sarcastic way, not really x

Be Well Davie boy and do not let them get to you.

Having a break from here David but will be back in a few days xx

Be Well David and Happy ..oh! keep chin up !!

Love to All of you

WinB143 xxxx xxxx

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Hi David,

I am glad you hung up on that stupid nurse who thinks it is okay to generalise about everyone by saying we could all die in a month. Yes, it is true that we could, but right now you have a 'patient' on the phone, asking a civilised question for an entirely appropriate reason - simply asking if he can just get an earlier appointment because he is scared about his health.

It is shocking that you can speak to one person, who was clearly having a bad day and gets you so mad you hang up, then you speak to another (supervisor/senior/manager) and it all gets sorted out there and then! Thank goodness you got the result you deserved in the end!

I assume you meant your new appointment is 2nd Sept, not Oct?

Good luck

Kel x

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Hey David

Well done for putting your foot down and getting it sorted.

I'm sure that receptionists at the docs are trained to be obtuse first and helpful third - with a nice dose of sarcasm second!!! Gosh they do annoy me!! Good luck for your appointment.

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Thanks all,

No, my appt is for October 2nd. They were so GENEROUS to try and get me in on Sep 25th at 2PM but I cant afford to break up my work day for these snots. So my appt is Oct 2nd at 4:30pm. Let's hope i don't die before then :)

I'm not sure what kind of training these nurses go through? We do have brain injuries no? I will be speaking to the nurse when I go to the appt. I will look her in the eye and ask her why would she say such a thing to a patient at a medical office? Not gonna yell, scream or fight but it will be priceless to see the look on her face. Bullies tend to back down when you confront them directly. She will prolly apologize or if not then she will show her true ignorance.

But you all at BTG should be happy to know that we are "cured" from our SAH after the event is over.

And to Mary and all I wonder if we are "chasing ghosts" by trying to figure out why we are exhausted and have headaches every day. It would nice nice to accept it, except for the severity of the symptoms we suffer.

David

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Davey~ I cannot at this point accept where I am. I can accept what happen etc... I cannot accept dragging my rear end around in a fog, sorry- someone has to come up with a better plan for me. I can on my good days but if I have to work another 10 years I need some kind of help as this "ain't working" for me. The thought of one more health issue happening to me would be the last straw! I just need to see some light at the end of tunnel, some hope. I want and need to productive. Heck all those years of judging non productive coworkers is going to bite me in my behind! I need some joy in my life. It is easy to say but when you work and cannot do one more thing in your day it is hard to drag yourself around to find an ounce of joy- ok I do have an ounce of joy but shall I say FUN. I lack FUN. I am a fun person or at least I use to be! I get a peek every now and then but it is not often enough to sustain me now. Nope, this is not "good enough" for me. I am ready to move on or give me 2 good days a week. Let me rest one day and feel rested and have a good day the next day. I can even reason why I have gone 2 steps back with headaches as I am using my mind/ reading/ comprehended more. But GEEZZZZZ Marie enough already.

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Davey~ I cannot at this point accept where I am. I can accept what happen etc... I cannot accept dragging my rear end around in a fog, sorry- someone has to come up with a better plan for me. I can on my good days but if I have to work another 10 years I need some kind of help as this "ain't working" for me. The thought of one more health issue happening to me would be the last straw! I just need to see some light at the end of tunnel, some hope. I want and need to productive. Heck all those years of judging non productive coworkers is going to bite me in my behind! I need some joy in my life. It is easy to say but when you work and cannot do one more thing in your day it is hard to drag yourself around to find an ounce of joy- ok I do have an ounce of joy but shall I say FUN. I lack FUN. I am a fun person or at least I use to be! I get a peek every now and then but it is not often enough to sustain me now. Nope, this is not "good enough" for me. I am ready to move on or give me 2 good days a week. Let me rest one day and feel rested and have a good day the next day. I can even reason why I have gone 2 steps back with headaches as I am using my mind/ reading/ comprehended more. But GEEZZZZZ Marie enough already.

Well Mary,

I agree with you as we are sort of in the same boat with working and feeling exhausted. However, work takes every ounce of energy I have and doesnt leave much time for fighting with doctors or having fun. I get to use my days off to fight with doctors. Of the 6 or more that I have seen, none of them seem to acknowledge that fatigue is a part of an SAH life. Somehow, I ain't seein the light at the end ofthe tunnel. I think some of us will recover better than others and it is an indvidual thing. If you know of a magic potion or magic "pill" that will make us all feel better, please share as I'm sure many of us could use it. If we have CFS, won't that pill fix us?

Davey

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Well Mary,

I agree with you as we are sort of in the same boat with working and feeling exhausted. However, work takes every ounce of energy I have and doesnt leave much time for fighting with doctors or having fun. I get to use my days off to fight with doctors. Of the 6 or more that I have seen, none of them seem to acknowledge that fatigue is a part of an SAH life. Somehow, I ain't seein the light at the end ofthe tunnel. I think some of us will recover better than others and it is an indvidual thing. If you know of a magic potion or magic "pill" that will make us all feel better, please share as I'm sure many of us could use it. If we have CFS, won't that pill fix us?

Davey

David,

I know I've mentioned this before but get someone to check your hormone levels. I am deficient in growth hormone. When you are a child it does what it says on the tin - helps you grow - when you are an adult it affects your muscle strength and stamina levels and sleep patterns. All of this =fatigue which has been my biggeest problem since my SAH. When they repaired me they damaged my pituitary gland and I am now due to start treatment. I spoke to someone else who was back for a check up and they said it works really well. They get a diabetic type needle pen but instead of insulin, it is filled with growth hormone. It's got to be worth asking about. maybe one of the local universities are doing a study and that would help keep your costs down. Just a suggestion - hope this helps you

Macca

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Macca, Do you think/ feel that once you had your brain issue that things just go haywire? I have always imagine our brains/system like a fine tuned Swiss watch, and when one thing goes off than it is like a domino effect. I felt this way for years since I have had my fine tuning button fall off. I get the mechanics of how it is all connected but I don’t know that doctors understand how that feels but it is for me first the thyroid, then the hormones, then endometriosis, then the fibro etc….. on and on. It is like having your shoulder operated on it is never as good as was before but it is better than it was when it had a torn rotarer cuff. You can not make any of it perfect again but with the right doctor ( good luck finding that one) but the mechanic of how it is all interlinked it fascinating if it were not happening to you!

MaryB

PS David- when I do go back to neuro and when I do see my GP next time I am asking about CFS and Fibro since both are similar and come after someone has had a traumatic event. It makes sense in my head as I knew what fibro felt like prior and it was like someone sucked all the engery out of me. They say to exercise but it was like my leg did not have the engery to do it. I left the water last night as I had that feeling of I cannot move my limbs anymore they are zapped of all energy. I had to rest on step before I could leave. I feel that way walking up my staris at times I can barely make it as my heart gets racing ( which is a muscle) and my legs go weak. Just saying for me.

Edited by MaryB
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Macca-

Thanks for the suggestion. I remeber reading on the internet about that somewhere about growth and pituary. Is it a blood test? Cause I've had many of those just last week. I am willing to try anything. My fatigue is a 10 most days as I'm sure it is for others. My brother had a cyst on his brain (different than SAH) with similar issue and he takes some kind of crazy stimulant drug. Cant remember the name of it but basically a stimulant. He says it helps.

Perhaps that is what we need to even things out.

Mary-

I thought you had told me your last doc told you that you had CFS. That may be my next go. Dont know what meds they give you for CFS. My friend has it, but he said he doesnt think much helps.

And as far as the stimulants. I am the CHICKEN on that one Mary. I took one many years ago and my heart raced so bad and wouldnt stop for like 3 hours. Never took one again. Doc says maybe Wellbutrin might work which is an anti-d with supposed stimulant qualities. I'll try anything. Rocket fuel if it helps. Light a fire under my a$$ whatever.

David

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It would be wonderful if the medical community, neurologists in particular - since that is supposed to be their field of expertise, would take a greater interest in the after effects of SAH. You would think it would be a rare learning opportunity! The first neurologist I saw (while I had good health insurance) seemed nice and caring, at first. Then as I continued to see him for various problems, he was short and I felt my feelings and symptoms were being trivialized. Yes, I too, had been cured. I was alive and should be thankful, forget the rest. :lol: I sat in his office and cried one day, told him I felt like nobody cared or could help me, used a few swear words which seemed to surprise him! HE asksed me about depression, sexual abuse, drug addiction, etc... Yes, I've struggled with depression for a good portion of my adult life - but it was well under control prior to SAH. He then suggested I see a psychiatrist and psychologist. Good advice and couold always help, however; didnt help with the fatigue, hitting that wall, being able to multi-task, any of those other things we all seem to deal with on a daily basis.

Didn't mean to go on and on about my own junk. I guess I needed to get it out, let you know I (probably all of us) understand the irritation, and lack of support we've gotten from the medical community when it is needed most!

When I went back to work (6 or 7 weeks post SAH), it was really hard. I pushed myself beyond the reasonable and thought I could handle it. I knew I was tired because I was working, but it didn't get better for me. The more hours I put in, the worse I felt. The headaches became unbearable at times, the fatigue was out of control. I kept telling myself "it will get better eventually". I was proud of myself for having gone back to work, for putting in those extra hours (regardless of how I felt), I could do it. I was raised to keep going, never say "I can't", blah, blah, blah.

I tried to have fun on the weekends and in my garden. While I did enjoy those times, my body and brain suffered for it.

When I was laid off from my work (my position was eliminated because I could no longer do 2 jobs at once - massage therapist/supervisor and receptionist!) Anyway still have anger issues over that, but it was a blessing in disguise, sort of. It did force me to slow down and allow myself to rest more. Financially, it was/still is a nightmare.

I'm fortunate to have some very close friends and good family who've helped to care for me financially. I no longer have my car, a home, a job. I've lost any sense of independence. I've worked at getting my self respect back, dabbled in my cookie business, and am still (after a year) waiting for a court date for a hearing for social security disability.

I've gone off the deep end here! Back on track - I think the main concern all of us have is the medical community, as welll as the general population, need more education in many areas. We must be our own advocates for our health - we have to be now. Sometimes it's very tiring and you don't have enough energy or will to keep up the fight.

Spending your "off" days having to make appointments and deal with health issues s*#*s. Having to deal with inept and uncaring idiots in the medical field or anywhere, is disheartening and hurts.

When I was a little girl and first saw The Wizard of Oz, I was in awe of Glinda, the Good Witch. I wanted to be Glinda. I still want to be Glinda and wave my magic wand, say all the right things, and fix myself and the world, lol. So today, I'm Glinda and waving the wand. Gonna click my heels 3 x and see if that works, too.

Love to all - have a strong day and keep up the good fight!

Carolyn

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In my heart of hearts I do not think they have enough information on us and our aftercare. I wonder how many suffer with after effects? Do most people turn out ok? Are there some surveys out there? I have “good” questions today to ask, if only a doctor would walk by!

Winter, it took me 10 years to be diagnosed with fibro as the health community was not believing it to be real. I saw great rheumatologists & cried when she put a name on it. By the way when she left that practice the first replacement I saw after her told me that he did not believe in fibro. I was devasted.

When my feet and hands went numb and I was losing balance I made an appointment in Chicago for a top guy – all he said was I needed a certain fibro drug. I was dumbfounded not one word on the new symptoms that were frankly freaking me out. Did not explain any of it to me – I ended up finding results on my own research. Similar to finding BTG.

My feelings for what we are going through are similar to those days of being not believed, that we are only seeking disability insurance (in the US?). But once they find out we cannot stop working because we carry the insurance I would think that would change their attitude. I am sure they see their share of people just wanting disability but I still think that they at least have to pretend to care! I know they have to weed out the “fakes” from the “reals” but I think that this would be a no brainer- no pun intended.

PS my GP has always made me feel good about myself. He would see me and groan “Is it going to an easy one today Mary or am I going to have to think really hard?”

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Wow, I just got done mediating and read this thread.

I have been wondering for quite some time about what SAH is trying to tell me in my life. I think...slow down. No more doing. Just being. No more seeking answers from those who know not. Only I have the answers I seek. There is no point in getting worried over the things I cannot do anything about. The answer is peace. My life can be either filled with frustration or joy...I choose. I was the one who got the SAH not anyone else I know. I am the special one with the opportunity for the profound understanding. No one else got the chance to see it...only me and everyone here.

Keep working on acceptance and joy. We can all find it, it's right in front of us at every moment.

Channel the tortoise.

~Kris

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Hidy Ho Kris, That would be great if my life did not consist of working, resting, working , resting .........If I did not have to work I could do more, be more at peace but since that is not possible. I will have to find a way to cope. Because all the resting in the world is not enough.

Peace out, maryb

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Wow, I just got done mediating and read this thread.

I have been wondering for quite some time about what SAH is trying to tell me in my life. I think...slow down. No more doing. Just being. No more seeking answers from those who know not. Only I have the answers I seek. There is no point in getting worried over the things I cannot do anything about. The answer is peace. My life can be either filled with frustration or joy...I choose. I was the one who got the SAH not anyone else I know. I am the special one with the opportunity for the profound understanding. No one else got the chance to see it...only me and everyone here.

Keep working on acceptance and joy. We can all find it, it's right in front of us at every moment.

Channel the tortoise.

~Kris

That is inspiring Kris. I think you and I are walking down the same path I may stumble a little but I like the trip :D

David I would like to say I cant believe the insensitivity the nurse showed. I hope she regretted the words as they slipped from her lips.

I would never wish an SAH on anyone but I sure wish there was a pill they could take that gave them random symptoms so they would maybe get a better understanding.

Good luck with your appointments

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