Susan McGoldrick-Meerdink

I do have significant damage to my shoulders. The latest MRI showed it is way worse than the doctor thought. I have a very high tolerance to pain so I don't complain or ask for meds. There are no less than 5 pea sized cysts in left shoulder, tears to the ligaments, and now I have bone marrow edema in both knees, both shoulders and my spine. This has been going on for years but they never find anything conclusive. I've tested negative for Rheumatoid arthritis, lupus, MS and lyme disease. But yet I clearly have an autoimmune disease. I think it is what made the environment perfect in my head for a SAH. I'm just really sad and frustrated. I just don't understand why. I need to be strong for my son. It's like a cosmic joke. "I'm going to give her cancer, take her uterus, make her use a surrogate to get her miracle baby and then make the child autistic." 5 years later, brain damage from a Perimesencephalic SAH and a broken body just kick it up a notch. Oh and my husband may lose his job in 2014.

I hit my 6 month anniversary from the day it happen and I went to the eye doctor. The Good news from all this…. my eyesight improved! I have been nearly legally blind since I was 8 and now my prescription is less than half of what it was before! So weird!!! The bad…… my body hates me. This fall I contracted viral meningitis which just about did me in. The doctors said it was because I went to Disney for the weekend and my immune system is so weak I should be avoiding crowds, especially air planes , trains and buses. Who knew?? My awful neurologist said "You only asked if me it was okay to travel from neurological perspective. You didn't ask me if I thought you *should* travel." FIRED ON THE SPOT! My primary doctor called the supervising doctor at NY Presbyterian in front of me and cut them to shreds for advising me to travel 4 months after a SAH. So now I have NO doctor looking at my head and I never got my 6 month MRI. To be honest, I am depressed. I've often thought, if it wasn't for my family, it would have been so easy to just "go". I found out yesterday that I need surgery to repair my shoulders….. BOTH shoulders. They have no idea why my shoulders are so torn up inside. I'm not an athlete at all! I'm a couch potato who spent most of this year laying on back with illness. So the great mystery is why my entire body is against me. This started two years ago. I went to the Rheumatologist and had every test in the book. I told them I was in pain… REAL PAIN. I could barely move. My entire body was so stiff and painful. Then in May the Rheumatologist said it was orthopedic because the ligaments were torn so I had surgery on one shoulder. Then I got a staph infection and two weeks later a SAH. Not one doctor has connected the dots that there something systemic in my body wrong. A housewife doesn't tear apart both shoulders and both knees as well her spine and hips from doing laundry!!! My surgeon said I have the body of a professional football or rugby player! (American not UK!)LOL There's that much damage inside. Here's the thing. I know surgery is the only way to fix my shoulders and end at least *that* pain but I'm afraid the next time I will die. 6 months ago my brain responded to all this by exploding. Why would a rational person subject themselves to all that surgery after surviving a SAH????? I think I 'm babbling now. Sorry if this isn't even making sense.

Thank you for this. It is 6 months for me and I am starting feel like I'm losing it. I was much more optimistic when I first came home. Perhaps it was just "I'm alive euphoria". I am not the same person. I look the same. Sound the same. Laugh at the same jokes. I am just NOT the same. In fact I feel worse today than I did before. I used to talk to my best friend every day. Now, it's more like every two weeks. She's pulled away. She doesn't understand I'm different. It's not that I don't want to call her but I'm just not awake past 7 pm any more. My husband seems to have stopped helping as well. Since I came home he's been picking up some slack with the house work. It's like the 6 month mark was a magic deadline…everyone gave me to 6 months than I was supposed to be back to who I was before, doing all the same things as before. Cognitively I'm so different…..nothing to the causal observer…just to me and those who really knew me well. It's frustrating.

I'm working on finding something to work on! It's 6 months and I find I am more spacey and less focused than when I came home from the rehab hospital. I feel like I'm stuck in a bad Doctor Who episode. I sit down at 9:00 am and it feels like the next time I look at a clock or become aware of moving on to the next thing on my to-do list it's 3:30 pm. I swear it's like time just disappears and I really don't know where it went or what I did all day! I'm also working on keeping my anger in check. My son is autistic and sometimes his quirks are just so tiresome I have to use all of my energy not to explode in anger and remind myself if he can't wear socks today just let him go barefoot, etc., etc.

I went and it was hell! LOL I don't know if it was too soon or if I was going to be that sick any way. Apparently I contracted meningitis during my trip so who knows if the headache and general "feeling bad" that started in Disney was because of flying or because I was sick. The day after I got home I went to doctor with evil bad headache, stiff neck and fever. None of us were sure if it was another bleed or what, but then came the diagnosis. Ugh........ My primary care doctor and neurologist now officially hate each other. My primary doctor called my neurologist an idiot! In front of me! LOL!!!! Guess now I really do need a new Neurologist!

My husband and I were talking just last night and he said "see, you think you've had a bad year...there's always someone who has it worse." I HATE THAT PHRASE! Why say that? My reply: No. WE"VE had a very bad year! I almost died TWICE! I had a staph infection from surgery, a SAH and this last two weeks meningitis. So No, I give us permission to say this year sucked for our family and just because I don't have something "worse" doesn't negate what we've been through! He laughed and said "you're right! We really are "those" people. The people other families are looking at saying "At least we're not Susan and Eric!" I think accepting just how bad it was leads to real healing. I'm not sweeping it under the rug in that Catholic Guilt Martyr sort of way! I'm proud I survived and no one is taking that away from me!

] Kris... I think you hit the nail on the head. We don't live in the future and the doctor's only know what the text tells them. Our kind of SAH should present with no issues. I'm only 4 months out so I'm trying really hard to adjust my outlook on life also. I know I need to make changes and I need to accept the "new" me and make peace with it.

I completely understand this!!! Before I was an organization queen! I was known for my ability to organize data and documents. Now, I need to organize all the medical bils, my son's special education paperwork and other "routine" matters and I find myself sitting there not even being able to get started! By the way, so jealous of you driving! I miss horses. I used to ride but my spine had other ideas and my doctors forbid me to do it again. That was about 20 years ago but it's still in my blood.

I thought it was just me! I lost lots of weight in the hospital but since I've been home alone gained it all back and then some!!! I find I just can't stop eating. It doesn't matter what it is...... but I just try to put stuff in my mouth. I think I eat more when I have a headache and am tired.... which now is all the time!!! LOL!!!!!!

Thanks!

What have you all been told by your doctors regarding flying on an airplane? I'm scheduled for a trip in a couple weeks and my doctor has not been returning my phone calls. I think it "should" be okay at 4 months post P-NASAH but getting nervous! I have a friend who is a pilot with a major airline and he said if I were his wife or sister he would say no way! The pressure in the cabin is too great. Thank buddy way to make me feel better!

Everyone already said but yup it's normal to be full of tears! I was told to expect the emotional roller coaster for at least for the first 6 months. Even my horrible neurologist told me that it takes at least 6 months to a year for the brain to fully recover. So cut yourself some slack and cry if you need to! We faced a life threathening traumatic event!!! I think if we didn't cry and get scared THAT would be abnormal!!!! (((((Hugs)))))))

Oh My! You are so early! I wasn't even home at 3 weeks yet! I was told under NO circumstances to bend over or lower my head below my waist! It raises the pressure in the head which can affect your brain. Apparently, especially at 3 weeks, there may still be swelling! You don't want to do anything so soon that will raise that cranial pressure! No lifting, no "hoovering", no bending over, etc. was the advice I was given at my hospital and at the rehabilitation center. I wish we all lived close together so we could all sit around together and support one another in person! Here's a big cyber hug (((((((hug))))))!!!

What I'm beginning to figure out is this....... While we are all searching for something profound to be the meaning of life, the true meaning of life isn't found in the miraculous or amazing but in the mundane. We are all here still. We all went back to being moms, dads, wives, husbands, friends, brothers or sisters and that my friends is what it is all about! The dog poop on the rug, my son's possible autism, feeling like .......that is the meaning of my life. I'm here to carry on, to live it. I get to experience this life. My life and that is the miracle. Perhaps the SAH wasn't to meant to make us worthy of an Oprah appearance or a headline in the newspaper, but rather to remind us that we are here and our lives matter. Although, it would have been nice if I had woken up amazing and skinny! I spent last night with my phone in my hand waiting to call the ambulance. My head hurt so bad I was scared to death, it was happening again. I managed to talk myself out of an anxiety attack by reminding myself I just had an MRI a month ago and it was fine. It was probably a run of the mill migraine from overdoing it and trying to pretend I'm well. It was a wake up call to not take this life for granted. I am taking for granted my body will always do what I ask of it. Clearly, my body has other plans which include staying in bed.

The guilt is the worst part of it all. In the hospital, I was overcome with guilt because I was alive but feeling sorry for myself. I was guilty because I felt like I should have an Oprah moment and suddenly do something incredible with the new life I've been gifted. I still feel guilty because "my head shouldn't hurt" but it does. I blame Oprah, Dr. Phil and all those damn "feel good" TV shows about inspiring people who go on to save the world after adversity....The reality is Angels did not come down from heaven and blow trumpets when I was released from the hospital. I went home and vacummed up dog hair. Then I got ****** off at my mother for letting my son draw on the walls while I was trying to rest. Yup. Nothing changed. I wasn't suddenly some Eat, Pray, Love saint..... I was still me. That revelation was so disturbing to my mother that we fought over my not "helping" her enough. She was supposed to be there to take care of me and my family so my husband could go to work. But she was expecting a saintly person to float through the door, she got the same old ***** of a daughter. She stormed off and I've been without help ever since.

Welcome!! Did I read that right?? You just had your SAH just a few weeks ago?? That's truly impressive you've gone back to work even a little! Keep up the good work!!! As for the back pain, yup! I had it there and then it travelled down my spine finally landing in my tail bone area. I was informed it was the blood from the brain that drained into the cerebral spinal fluid and since that system is not meant to handle ANY extra, the blood from the brain thing was causing extra pressure and hence, pain. It is supposed to go away. I am 3 and half months since mine and for the most part the pain has subsided. It took a couple weeks of steriods to finally get the last of it to subside. I do still occassionally have the pain in my tailbone area but it is tolerable now.

I'm glad you feel better! :redface: I really did not expect any response. I feel more confident the more I read on the forum. Thank you all so much just for being out there somewhere in the world sharing how I feel!!

I actually asked for help today! LOL I've been having some additional health issues unrelated to the SAH and could not walk at all yesterday or last so I woke my husband up at 3:00 am and said I need help tomorrow! You have to take our son to school as I will never make it! He did and guess what? The world did not end! :lol:

I am thankful for this board and for people who are also dealing with the same issues. I was unsure if I should post that "letter" here but I needed to say those things to someone and I didn't want to hurt my friends and family's feelings. I don't think I was down when I wrote it. They are things I've been thinking for a while now and to me, this is my new normal and least for now. However, I do cry often. The doctors did say the emotional changes are normal after any brain event and in most cases they level off. Also, I am now a slow talker so writing is easier. I'm so sorry for Julie (I think that was the poster) who received NO outpaitent care!!! That is horrible!!! I credit my recovery and to me I am pretty well recovered considering where I started, (even if I have a ways to go) with being able to be in Kessler Institute for Rehabilitation. It is where Christopher Reeves stayed after his spinal cord injury. They were so wonderful. I watched other patients come in after serious strokes not able to walk or talk and within weeks do both! After release many of us who were inpatients together also had outpatient neuro PT at the same time. We cheered each other on and even cried when we saw one of us walk in even if it was slower and labored! I made a point of introducing myself to the care giver of whomever I noticed an improvement in and relay to them how far their loved one had come from when I first met them inpatient. I will never forget the woman in the bed next to mine in the hospital. She had an inoperable brain tumor which turned out to be cancer. She was 76 and had been married 55 years. Her husband came every morning and stayed all day. They were the happiest people I ever met!! One day when I was as low as I could be, she got her cancer diagnosis. I could hear the doctors preparing them for the worst. Instead of the reaction I would have had, this couple exclaimed "That's Wonderful!!!" The doctors asked them did they understand and the couple replied, "Of course we do but it's wonderful you know what it is and now we can get started on treatment." Every day, the husband of that woman sat with me when his wife took a nap or had to go off for a test. He held my hand when I was crying in my sleep. He sat my husband and I and told us the secret of his happy and long marriage. He told my doctor when he felt I was unable to speak but needed help. Somehow, I feel the need to honor that couple in my own life. I still am working on it but eventually, I will figure out how. Okay totally forgot where I was going with that story!!!! :lol: My brain just took a vacation!!!!! Sorry!!!!!!

Just because they sent me home and told me to heal doesn’t mean I am healed. My head still hurts. I still feel like something is missing but can’t tell what. I know it was a relief for those who know and love me to have me sent home, but to be honest, that’s when my quiet hell started. Everyone looked at me with anticipation, waiting to see if “I” was there or if I was somehow different. When I spoke, people smiled and said I looked great! It was an act. I was never okay. I pretended to be for you all. I wanted to be. I really did. However, my reality is very different than fine. It’s been 3 and half months, 107 days exactly since my brain mysteriously started bleeding. They don’t know why. Nor do they know why it suddenly stopped. They didn’t find an aneurysm but they also said it didn’t matter anyway since the bleeding stopped. Which brings me to my follow-up doctor. Doctor, you are surely good at what you do but I beg to differ on my prognosis. You see, contrary to the textbooks’ statistical analysis of this type of hemorrhage, I do have cognitive deficits. Just ask the people who live with me. Ask my husband who witnesses me wander aimlessly around a supermarket because I can’t tap into the organizing and processing part of my brain. Tell him how I “should” be 100% when just in the last month I have almost burned my house down and killed my family no less than 3 times. Tell me again how the pain in my head doesn’t make sense. Roll your eyes again when I report how I am falling and unable to move my left leg very well. I love when you do that! By all means, dismiss me. I must be crazy even though your own neurological exam shows a significant weakness on the left side. When I cry in your office I really like it when you put your pen down and look at your cell phone, especially when I am divulging how difficult my life has been and am asking for help. I don’t blame you. You don’t know me. You don’t know that I am someone who has never complained to anyone or that I never ask for help because I’ve always been “the strong one”. I get it, your other patients, the ones in wheelchairs, they are in much worse shape than I and therefore must warrant your full attention more than me. Speaking of that wheelchair, I did start out in one but you never met me until weeks after I was released from rehabilitation. Hell I couldn’t even move my head without puking. And yes, I still have nausea every day… every time I move. No I don’t actually puke anymore, unless my headache is really bad, so that must mean I am better. Right? Wrong. I walk like I am drunk. I now have to endure the glances and stares of strangers. I walk funny. It’s not a limp as if from an injury. It is just funny. I must appear either drunk or like I just pooped my pants. It takes every ounce of energy to walk “normal”. Even just walking a few feet cause me absolute exhaustion. Speaking of which, exhaustion is now another thing I fight daily. I’m not talking about the kind of tiredness you feel when you’ve stayed out late one night and gotten up early the next day. I’m not even talking about the type of exhaustion new parents feel when they are so sleep deprived their body shakes. No. What I am talking about is a fog so thick and so all consuming that when it hits, if I try to fight it, I puke. When I try to fight it, the vice grip squeezing my brain starts tightening to the point of dizziness/lightheadedness. That feeling you have seconds before you pass out. THAT. Oh yeah, it doesn’t come at convenient times like when my son is in school and I could pass out. No. It comes just as the clock shows me it’s time to pick him up. Yup. I get to drive when my eyes can barely stay focused. Why don’t I get help? Good question. The answer is simple. Statistically, I should be fine. 100% says my doctor. So there is no need for help. So I cry and I pray. No one understands. My husband has done the best job of trying to but really, no one can. At least no one who has never lived through the terror of facing death. Yes. Death. And no I am not being dramatic. Death is the outcome most expected when you have a subarachnoid hemorrhage. That is why they put in you ICU. THAT is why the doctors smile broadly when they shake your husband’s hand after the first 48 hours. THAT is why the neurosurgeon can joke with you that you get to keep your long hair. How you ask? Because doctors could not be so relieved and happy when you pull through if they weren’t preparing for the worse and now relieved it won’t happen to this patient. The lack of death is what allows them to get a bite to eat before their smiles fade and they move to the next “head case” who needs their attention. I can’t show you my brain. My “disability” is invisible. If I stutter or stop mid sentence, don’t try to finish my sentence or guess what I’m trying to say. You will only make me forget. If I walk funny, try not to stare or point to my face. If I cry to you I need help, ask how you can. If I tell you my head hurts, empathize if there is nothing you can prescribe. And if I am sad, allow me to be. So if you see me, whether stranger or loved one, be kind and remember, it IS all in my head!

The drug I'm talking about is the name brand of the Butalbital, Acetaminophen, and Caffeine combo used for migraines. I spelled it poorly... oh wait you are a teacher... "I poorly spelled it!" LOL Yes. I do need a new doctor. It just seems so daunting to find another one. We thought it was best to stay within the NY Presbyterian hospital system but alas it's not worth it. She lacks compassion or empathy for what I'm dealing with now.

I know I am still early but for the daily pain, I take Firocet (sp?). It's a prescription the case manager at the Rehab facility prescribed not my neurologist. Claims it is impossible for me to still have daily 24/7 headache, even though her boss who treated me in the ICU told me and my husband I will have a headache for the rest of my life!!!! The Firocet works pretty well knocking the head pain down to a dull throb like a normal eye strain headache. When I need an extra boost I combine it with Percocet. I don't get drowsy at all from them but if you do it might not work. I hope you find relief that works for you! This sucks as a way of life but I guess this is our new normal.

I think I'm learning I need a new neurologist! This woman is so dismissive and I have to remind her how short a time it's been since my bleed. She treats me like I'm crazy! Good for you for finding a someone who listens!!

I have been complaining about my face hurting around my sinuses since I came home almost 2 months ago! And the TEETH hurting is bizarre but yet as I type my front top teeth HURT! And my head always feels like its in a vice grip being squeezed! I'm not happy we are all having these symptoms but I am so happy I'm not crazy!!!!!!! I've two MRI's in the past 2 months because of the face numbness and teeth pain looking for signs of something but all are normal. I read the older posts in this thread and had not thought about how the kidneys would have to also deal with the blood being reabsorbed by my body! I have been slacking on drinking my water but starting in the morning I will be drinking water all day again!

I'm crying like a baby!!! I had begun feeling so guilty and so depressed because the old me is gone. Just knowing you are all there and are going through the same things is beyond a comfort to me!!! I am afraid to be alone some days becuase of the forgetfulness. Today I left an iron on my bed plugged in and started a small fire in the bed. I have left the burners on after I was done cooking more than once. The day after I came home from the rehab I had a TIA (mini stroke) probably a vasospasm as my blood pressure spiked when I recieved some devastating news about my 5 year old son. The hospital assured me there was no bleeding just a small stroke. Recovery has been difficult emotionally as I don't have outward signs of illness or disability so everyone expects me to go back to being the strong one with the Type A personality who does everything for everyone. It's been hard but I've actually had to distance myself from my own mother because she just didn't get it and was causing too much stress. The ICU doctors teased me when I finally became conscience and said you came in with a 160 IQ and your leaving with a 135 (still well above average.) I was the joke of the ICU because apparently even unconscience I talk with big words I learned from 12 years of catholic school! They called me Chatty Kathy! I try to pretend to be alright for my son's sake. He was the one home with me when it happened and had to witness me pass out. My little man opened the front door for the police and brought upstairs to find me on the floor. I called 911 when I heard a loud POP between my ears and felt the pain starting in the back of my head. I don't remember what I said something to the effect of "Help! Brain! Pain! Pop!" I'm sorry if I'm babbling but it feels so good to talk to people who really truly understand!!!!