Teechur

My goodness Louise! I'm surprised you haven't grown horns and have steam blowing out your ears from the frustration of waiting so long! Congratulations, though! What a relief. It is this that scares me when I consider going on part time disability, even though I have paid for disability insurance. I wonder if the stress will be worse than the stress of working and running out of sick pay. I do every year. I still love my job, though, and don't want to lose it but would like to go to half time. So happy for you and bless you for hanging in there!

How horribly sad. I can't even begin to imagine the pain of losing a child, particularly when it was so preventable. I was SO blessed that I went in and said "I feel dumb, but I have a really bad headache and I don't get headaches. This is the worst one of my life." Within ten minutes I was triaged, and five minutes later one of my former students was leaning over me saying "Mrs. K!? So nice to see you! Only wish it were under better circumstances!" Within half an hour I had a diagnosis of a small hemorrhage. Just a simple, relatively (as medical tests go) inexpensive and quick CT scan would have showed the blood on her brain immediately. Scan machine broken? Give me a break. Send her to another hospital, or use another machine. It sounds like she had a lot of trauma. If they could see mine with a simple scan, even an x-ray would have picked up hers. Oh the student was the radiologist and was one of my best students. Love that girl!

You're right behind me Tony! So glad you're finding your way. This is such a strange journey to navigate and most of us aren't given a broken compass, much less a map or guide! Sometimes I wish my doctor would tell me to stop working because I am EXHAUSTED! But I keep keeping on and I love my job...

I can "hear" the relief in your writing. I just hate that this happened to all of us. Every step is a victory so take "only" out of your vocabulary. It's hard for us busy ladies to hear this but do remember that this can be two steps forward, one step back but it IS forward. Some days you'll feel like a million bucks and others like gum stuck to the bottom of a shoe. That's all normal. Everything is normal yet nothing is normal. It just is what it is for now and soon it will go back to what it was, hopefully. Or it won't and if it doesn't you are strong, obviously, and you will find a way to make your new life just as awesome as your old one. (I'm still working on that, but I'm stubborn.)

Yay Clare! I'm a runner too. I have found my times have slowed dramatically and I can't seem to figure out why. Headaches get in the way of my runs, but not so much that I can't run marathons. I am up to 109 marathons or ultra marathons. My headache doctor (she is a neurologist with a specialty in Headaches) prescribed running as part of my treatment plan because of the way it helps to release serotonin and dopamine for natural pain relief. It also exposes us to Vitamin D, which we need for healing and more help with serotonin creation. (Well exposes us to the sun which allows the body to make Vit D.) When I run I feel like the real me. I actually ran with my walker. (I always worried that someone was driving by and thought, "That lady stole a walker from some handicapped person!" Haha!) I love nothing more than getting out in the woods with my dogs or with them and my friends. I actually feel like I think clearer when I'm running.

John and Clare You are very right that you cannot compare brain healing to any other type of healing. It's like a roller coaster, only with no rhyme or reason most of the time. Some days you can feel like you're finally getting back to normal, only to have three days of needing to be in bed or even UNDER the bed. Nothing is normal, but everything is not abnormal, if you know what I mean. You will sometimes feel like your skin is crawling with spiders, or not. At times it might feel like someone is pouring water over your brain, or not. You may find yourself fatigued from a simple phone call to a stranger where a visit with a friend that is three times as long is fine. A "quick run to the grocery store" in your old mind is nothing. To your new brain (or new for now) it is a bombardment of colors, sounds, feelings, tastes, smells, and people that simply won't compute. It's also multiple decisions that must be made that may take much more time than it used to. This will pass, but for now don't fight it, give into it and let it wash over you because adding frustration to the frustration only makes it worse. For me, I can run a marathon and feel great but have a conversation with someone on a stormy day and be slurring my words and have to hang onto walls. On a stormy day on Saturday where we literally had every type of weather except snow, I ran with a headache for 11 miles Saturday (I'm a running coach), but as soon as we finished I went home to bed. It was horrible. As for doctor's plans, listen and take notes. Write down questions (or have someone do it for you) and take them with you. Remember, though...YOU ARE THE ONE WHO HAD THE SAH. With very very rare exception, your doctor has not. One time my husband said to me, "But the doctor said your headaches would be gone by now" and I finally had enough of hearing that and said "Roy, the doctor has not had an SAH. She has only treated them and let patients be discharged. I have had one and am living with it. It doesn't matter what she's said or not." They can tell what to expect, in general, but since the brain has a (har) mind of its own, it will do what it will do. For most of us, life gets almost back to normal. I have a few deficits after three years of a minor bleed. I have a rough time with math, when it used to come easy. On a very clear head day I can do math in my head, but not most of the time. No big deal. I'm better off than most. I also still have a headache. That's worse, but it is what it is.

Praise the Lord! Definitely give it to God. I'm not good at that. I do give it to Him, but often I wrestle it back from Him. He understands. He made me stubborn that way. However I find when I finally do just give it up in exhaustion, it is such a relief. So thankful you can rest easy now.

You know Louise, I like the person I am too! I never thought about it that way. I may miss the life, but I do like the person. I'm way more chill and laid back. I don't sweat the small stuff because it's all just small stuff. I like that about me now. I do wish I didn't have to lay down in bed for two days a week sometimes (this week has not been good, but today is) but I like me. I'm going to hang onto that! I do not know what we're doing. It's a surprise! Oh, I am doing a race, not running it although I am running part of it. Every year for my birthday I organize a race. It started with 11 people and is now over 200 people. We raise money for someone in the community to change their life in some way. This year we're getting a racing wheelchair for one of my former students who is paralyzed from the waist down. I'm very excited for that!

The business has actually dropped because I have let parts of it go for now because I can't keep up with it. I know I will be able to at some point, or I won't. I'm okay with that. The part I let drop off is the part that was most emotionally draining; working one on one with weight loss clients. I love love LOVE them, but it did mean taking on other people's emotional problems and I find that kind of thing the most draining. The fitness aspect is actually the least draining. I can let my mind just go and exercise (although I've learned not to look over something and believe I will remember it when I get to class...good thing I can laugh at myself). One thing that is a total blessing is that my ability to stress is just gone. Is it all the meds I'm on? Did that part of my brain die? I don't know. It's probably a good thing I don't take care of the bills, though. Ha! I am actually at a teaching hospital and have never stopped seeking out new junctions (that word doesn't feel right) for treatment. I'm currently being seen by some doctors at the University of Washington. I have some ideas to cast my net further afield once summer hits, so I'll start coordinating that soon. I guess if I ever do go on disability I won't lack for paperwork! Win I love you to pieces and will even put you back together again, on a good head day. On a bad head day you're on your own. I always tell my husband I plan to torture him until I'm 99 and then I'll stop and reevaluate my future so he's STUCK with me! Haha! I actually do have a sunny outlook, which is part of the reason why the depression is freaking me out! I've always been called Pollyanna (sometimes not in a nice way). You know, one of those people who is a morning person and whistles a happy tune at 5 a.m.? Yeah, that's me. Well, maybe 5:30... Not sure about pain management. My neuro tells me that it will only cause more pain in the long run. On the one hand, everything I research says the same thing. On the other hand, sometimes it would be nice to take a pill and just feel good for a little while. The running is like a pill. I have a plan for the summer; run every morning for at least 10-20 miles to see if I can disrupt the pain signals and maybe "retrain" my pain neurons. At this point, it couldn't hurt, right? Low pressure front coming in tomorrow, and I have a 12 hour race which is a training run for me for my 50 miler. I refuse to let it stop me... Daff I love what you have to say. I haven't, obviously, let what I have going on stop me from doing much of what I do. I still have to work every day and be there for my husband and my students. I just feel like if I could just get over this mental hump, maybe not spend so much time being mad at myself...I don't know. Maybe I am mad at myself for not accepting and moving forward. It just feels like there is this obstacle and I can't get over it or around it so maybe I need to wish it into the cornfield and run past it.

I have started to see a therapist, who deals with chronic pain, for my headaches. This Winter has been extremely hard because of the weather. I've kept close track of my triggers and pressure drops seem to make it way worse, and pressure rises make it kind of worse. Well we get three days of rain, then about day three I'm getting used to the drop and we get three days of cold and clear. Just when I'm starting to feel like life is awesome again, the pressure drops and I want to jump off a bridge. When I started having "Maybe it would have been better if I hadn't made it..." thoughts I knew it was time to talk to someone. First I tried my husband, and while he's a great and supportive man, this topic really freaked him out. As a friend said "Don't go to the bakery to buy a hammer." I realized I needed someone who was more qualified to deal with my depression. What I "want" and what is reality are two different things. I want my old life back where I got up at 4:45, went to the gym, then off to work, came home ran 5 miles, then taught bootcamp. My days were full of activity and I was full of energy. I had no desire to slow down or change my life at all. I had a business that was growing every year, and the best teaching job in the world! What I have is headaches every day. I rarely work out every day of the week, but I am still very blessed that I'm back to running marathons. While my business has fallen to an embarrassing level, I still run it and I love the people in it, and cherish the friends I make through it. I am starting back at the gym with weight lifting and am averaging one day a week. Hopefully I can go today. So it isn't what I want, but it isn't bad. I want to want what I have and I want to stop being angry at what I lost, and depressed over the pain. The pain wears me down...just wears.me.down. I'm sure some of you can relate. My therapist suggested two activities: 1. Take a specific time to mourn my old life and then let it go. Say to the people in my life, "I am going to be sad/angry for two weeks" (or a weekend, or five days, whatever I decide) and then take that time to cry or rail or whatever I need to finally say "That life is gone" to allow me to move on. 2. Write a letter to my body telling it how angry or disappointed I am in it. I did tell her that I almost felt betrayed because my healthy lifestyle was purposeful. I chose to exercise every day with a goal of keeping lifestyle related illness at bay. For some reason I am finding I can't do these things. I don't know why. I know this is all a process, but I really feel like I should be ready to move on by now. All you all seem like you are so much more accepting. Part of me feels, I think, like if I do that I'm giving up.Then even as I think that, a little voice says "Giving up what? It isn't like if you learn to accept your limitations that these are your limitations forever! These are just your limitations for now! So it's like I have all the right words in my head, but my heart isn't following along like it "should" and then every time I say "should" I hear my therapist say "There is nothing you 'should' do right now. You suffered a loss and you can take as much time as you need to mourn it." AIGH! Being an adult is hard!

Thanks. It is a good opportunity to keep my position and what I love to do. Hopefully next year the Winter will be easier. It's more like Fall this year so maybe it'll be Wintery where usually we'll just have a lot of cold days one after another, as opposed to three days of clear followed by three days of rain. My brain can't get a break that way and get used to the weather pattern. I've made it to work every day this week, but it's been hard and has required me to go home and go to bed immediately twice. I hate that, but oh well. Hopefully we can move in a few years or even better, I'll heal up!

I did the denial thing too, but it was because I'd never had a headache so bad and had never heard that "the worst headache of your life" can be the sign of a stroke. I actually sat through a movie, went home and tried to take a nap, and all the while I was completely in so much pain that every beam of light and every sound made me want to vomit. Looking back it made no sense to NOT be alarmed. If I hadn't posted on Facebook "I have the worst headache of my life, is this what a migraine feels like?" Thank God among the suggestions to take Excedrin and drink coffee were people in the medical field saying "Go to the hospital! Go now!" and one of them started texting me furiously. So I finally did, six hours later. So thankful I did. No telling what the outcome might have been. I find it interesting that studies show that most people have a good outcome. I've always wondered what that means? To me a good outcome is no deficits or impact on their lives. I know my neurosurgeon thinks I had a good outcome but she has no idea that three years later I'm on medication (I never was on a single thing before) for chronic daily headaches. I don't consider that a good outcome. She hasn't bothered to follow up. It seems from here and the people I know personally, that there are a lot of not great outcomes. Not necessarily HORRIBLE outcomes, but not "good" outcomes.

...and Iola, I hear you. There are sometimes when we have stable cold weather (hot works too, but no rain is what I need...high pressure) and I feel good for a few days in a row. I still have a headache but no dizzies and the pain is light, really bearable. When that happens I get hopeful that maybe it's changed and I'm healing. Then it's like the other shoe falls and the pain returns. I am so disappointed on those days. You'd think after three years I would recognize the pattern and not get my hopes up, but I still do. (I mean I do recognize teh pattern, but it doesn't seem to matter.) I'm just really having a hard time coming to acceptance that this is it. I'm entering my 50s (ack) with a perfectly healthy body but this neverending headache that may very well be NEVERENDING! Poo! It's not that I want to give up hope, but I want to, but don't know how to, get to acceptance without it being "Well this sucks but I guess this is my life now, woe is me." I want it to be "Okay, this is my life and I can deal and I'm so blessed in so many different areas that I can handle this with grace and laughter and lots of appreciation for what I do have, not mourning for what I don't." Normally that's who I am (the latter) but for some reason I just canNOT get there yet and I don't know why my brain is being SO stubborn on that front.

Well I just can't seem to pull the trigger. I am now seeing a chronic pain therapist and trying to figure out how to work all this out. She does think I use all of my spoons on other things when I should be saving them for myself, and to an extent I agree. Selfishly I wonder who I will be if I stop teaching. I am not a mother so I don't have that. I am not particularly talented at anything except I am a very good teacher, guide, and motivator and that's about it. Oh I guess I can write as well (just don't base that talent on my writing here because I tend to write more "stream of consciousness on the forum). So if I did leave teaching I am afraid I would feel like I had nothing to offer the world and if I paired that feeling with the depression from the pain I just worry I wouldn't do well. I don't know. It sounds silly when I write it out, but it is in my heart. So the plan is that next year my students who are in the second year program will do a test of being off campus two days a week out on their school sites as IT interns. I will go and check in on them every now and again, but they will otherwise by supervised by the technicians there. If that goes well the next year all students will, after the first maybe half quarter, be on campus three days a week and off on internships learning on the job two days and those two days I am released to check up and them. This was my administration's idea as a way to keep me able to work and have the option to rest if needed, and then supervise and check on them as needed. So I may not need LTD. I'm very excited about it, but it does take some energy to plan so I'm trying to be more cognizant of my spoons.

Sending love to you and prayers for a steady hand and laser focus to your surgery team.