Hello. i'm new

hello everyone. i'm sorry to meet ya'll under such bad circumstances but i'm grateful ya'll are here. please forgive me as i learn how to navigate this message board if i should make any mistakes.

i'm a 42 y.o. stay-at-home-mom of an incredible 9 y.o. son and wild 4 y.o. boy and girl twins. we also have 3 dogs, 3 cats and a hermit crab. i've been w/my husband since we were both 16 and we were married in 1990.

i'm having a really hard time dealing with the aneurysm and recovery. the last day i remember feeling well was halloween. we did the wizard of oz; i was glinda, my husband was the scarecrow, 9 y.o. was tin man, 4 y.o. boy was the lion and 4 y.o. girl was dorhty complete w/a stuffed toto.

the next morning i woke and felt absolutely miserable and didn't get better. i finally went to the walk-in clinic and was diagnosed w/a sinus infection and bronchitis and was sent home w/antibiotics and cough syrup. still didn't get better and the left side of my head hurt badly so i went back to the walk-in clinic. the doc gave me an antibiotic shot in one butt check and a prednisone shot in the other and prescription for a new antibiotic and pain meds because he said i was obviously in pain. the next day i woke to discover my left eyelid wouldn't open more than a quarter. this time i went to a new doctor in town who sent me straight to the hospital for a ct scan where the aneurysm was discovered.

i saw the neurologist the next day. since it was so close to my brain, i had to see a specialist. i had the coil surgery on the 14th of november, 4 weeks ago today. while on the table, an absolutely horrid experience in itself, something broke loose in my brain and i lost the ability to speak and the use of the right side of my body. the surgeon fixed it then coiled the aneurysm and i felt EVERYTHING. i spent the night in icu flat on my back w/my husband and best friend taking turns feeding me.

i was released the next day and vomited all the way home. (we live about 2 hours from savannah so it was a long, miserable ride home.) i began to feel worse and worse - even worse than the recovery from the surgery - so i had to go back to the walk-in where i was diagnosed w/walking pneumonia.

i am now so weak, i can barely care or myself much less 3 small kids and i have no help. my husband comes home and cooks dinner and cleans up but i feel a great deal of resentment on his part because i am no longer useful. also, one of my other "best friends" kept telling me i needed to make myself get up and clean house to keep my husband happy. she just wouldn't hear that i was too physically exhausted to even shower on a semi regular basis. my 9 y.o. has missed quite a bit of school because i literally don't have the energy to help him get ready and get him to the bus stop or drive him to school. also, since i have no one to help, he helps me to the best of his ability.

more later...... so very tired.....

I hope you feel better, we have some rollercoaster rides as i'm on one myself now. I had a rupture and know its hard to tend to things, maybe you can get some help from a agency , check out what your local agencies have to offer.

HI Kathy,

I pray that you will get to feeling better soon. This whole journey is a completely different way of life for a while and longer than one month. You had a major surgery and it takes time to recover from the surgery. Let your friends and husband read some of the stories and recoveries of the survivors on this site. It should help them understand what you are going through. Also, there is a "letter from the brain" that gives a great description of what your feeling and what you need to do to heal. It has been on here several times. I will try to find it for you. Take care and rest...That is most important.

Karen

I am so surprised by the number of posts here where they were coiled and practically kicked out of the hospital a day later. My aneurysm ruptured and I was in the hospital for 18 days. I also had pneumonia from inhaling vomit in the ER, a staph infection in my picc (IV) line and blood clots in that same arm. However, I was begging them to let me leave a week out. I was told that I was the longest aneurysm patient they'd ever had in the ICU. I wasn't allowed to leave the ICU until my vasospasms were gone. It breaks my heart to hear about the lack of care so many of you have had. Weak is normal. It's been a year and I can still sleep over 9 hours a night where in the old days, I got by on under 8--6 hours was typical. I get headaches all of the time now whereas I never did before. My aneurysm was caused by damage years ago and I don't have more. My headaches are basically tension. Weakness is normal, stress and fear and PTSD is normal. I certainly hope your husband doesn't see you as "no longer useful" as though you are some kind of replaceable part. I would think that he and your friends would be grateful that you are alive. Lose your toxic friends and only allow people in your life who bring you positive energy. I sense you feel guilty and if you are, you should try your best to let go of it. You've done nothing wrong-- nobody intentionally gets and aneurysm! You will not feel like yourself for a while and keep in mind that you've had brain surgery! It's not a paper cut. I highly recommend asking for some help--possibly a family member or as Laurie said, check out your local agencies.

Kathy,

Hugs and prayers are wrapping around you; do you have family who could come spend some time with you?

Has the neurologist addressed your ability to drive safely? Has your vision been checked? Are there other parents nearby who may be happy to give hand in picking up your son?

Because of my personal experiences, I have major concern for the pain you experienced; I was in coronary care following the purported diagnostic angio and that the coiling was supposedly done two days later. I will be publishiing s there is another with ananeurysm the same size in the same location.

Have you recovered from the pneumonia and how soon did it start after the coiling? What testing was done for that diagnosis? Have you ever had pneumonia before?

There is a group here that are the spouses / family / caregivers and I pray your hubby will come on and share time with them to better understand. Please remember that he also went thru emotional stress while you were hospitalized and the continued adjustments in his acivities. Also, invite your friend to view this site.

Kathy, please rest every minute; do you have people in your church who volunteer; any other organizations or friends? Can you secure a housekeeper for the basics, and, babysitter to be on hand while you sleep/ rest?

Hugs and prayers,

Pat

karen has put it so well...you survived a life threatening trauma...my Lord...please dont feel bad about something you had no control over...and bless your lil 9 yr olds heart for trying to help you..you have got to get some help n support with your kiddos..that friend who told you to get up,take a shower n make urself a "good" wife...id tell her to take a long walk on a short plank..lol..no one! i repeat no one can tell you how to act or for that matter, how to recover from an anuerysm. God bless you..that hospital should be ashamed of itself for releasing you so soon..i had a ruptured anny at 41, stayed n icu a wk, hospital a wk then home for 4wks b4 returning to wrk patr-time..sleep n rest is mandatory in a full recovery..we have united healthcare, they were calling me everyday to see how i was doing..my husband went back to work and dghtr 20 n son 15 constantly checked in on me after school..my mother also stayed w/me the 1st wk i was home...i was very blessed...you also sound to be very blessed with a loving family..they, especially ur hubby may need to be educated on what an anny does in effecting the whole family...did they give you a nuerologist to follow up with..? i would call the surgeon who did your procedure n tell them you need some follow up help..they can refer you to someone within their hospital..do you mind me asking what hospital you went to? i will keep you in my prayers for a recovery w/o any kinks...my heart goes out to you,,please stay positive and believe your life will get better..God wont bring you to anything he wont help you thru...wished you lived closer i would help you n your family to understand...if you ever need someone to talk to call me..i will msg u my number..also to let your husband know you need his help right now...prayers n hugs to u sweety

thanks to all of you for the support. it means more to me than i can possibly articulate.

i have so many questions, angry, emotions and i don't know how to deal w/them.

maybe i can post tomorrow when the twins are in daycare.

much love and appreciation to all!!

oh..... did i just reply to myself? i wish i could figure out how this forum works! lol!

Kathy. I agree with the others. Rest is so important for you right now. It is absolutely necessary for your body to heal. I ruptured, was in the hospital 4 weeks then home for atleast another 6 months. I was never alone the first month or so. I remember being so tired I couldn’t even shower and dress. A clean house does not matter one bit right now. You need some help. My recommendations from personal experience are rest, rest and then rest. Do make your body slowly do things like walk for a few minutes at a time and slowly increase to build back up your strength. The emotional part is just as tough and both physical and emotional health are going to take time. You need to let your husband know this so he understands and if possible you should check for a local support group or survivor who can be a shoulder and sounding board for you. Take care of yourself and take things one day at a time.
Shelly

First of all...I never heard of having coiling done awake...that is unbelievable in itself...then being released the next day...sweetie...something isn't right...you need to see see another Doctor and/or Surgeon...please ... if nothing...call the hospital you had surgery and speak with a Patient advocate...and get copies of your records and films...Bless your Heart...something isn't right...and I know you know it...Secondly, You have my prayers...I cried while reading this post, makes me so mad at medical people...

Keep us posted...Cyber~prayers and healing thoughts your way...Colleen

thank you for your reply. i'm so sorry you had a rupture.

one of my dear soul sister friends is out of work now due to being rear-ended. she is supposed to come stay w/me but my husband says he refuses to have a "live-in". the only option he's given me is his mother and i cannot tell ya'll enough how absolutely horrid that woman is. she came to "help" when the twins were born but refused to do anything to help me. the twins were 6.5 weeks premature via c-section and jaundiced yet the hospital sent us home less than 2 days after they were born. i had to take them to the hospital every day to have their bilirubin levels tested and rent bilibeds for home. the MIL would cook something to eat for herself and my husband and tell me i could get whatever i wanted. because i had to fend for myself and take care of preemie twins, my incision ruptured which meant i had to go back to the hospital daily to have the rupture packed. it bleed so badly, the nurse thought it was an artery. also, the boy twin, aiden, had something seriously wrong w/him yet the pediatrician refused to hear me. he claimed i was just an overwhelmed mother of twins. as it happens, he had intestinal malrotation and required serious surgery at 10 weeks of age. i refused her "help" because her help made matters worse last time.

my husband won't let go of any $$ for help. i'm lucky to be able to take the twins to day care from 8 - 11:30 to get a bit of rest.

thank you. thanks to this site, i now understand what i'm dealing with. i guess no one who hasn't been through it is capable of understanding. i did find the "letter from your brain" and it helped me a great deal. the constant nausea, weakness and dizziness is my brain telling me to slow down. i just don't have the option.

what a horrible experience you've been through!! i'm so, so sorry!!

the one positive thing i can see that's come out of this (because i'm always looking for the life lesson in every hardship) is that i'm learning to draw boundaries. there are people in my life who have always accepted my help but have been unable to reciprocate when i most needed it. i don't help others and keep score so that i may gain something from them later - i do it simply because it's the right thing to do - but i realize that although i've been there for many, they haven't been here when i've most needed them and i am know drawing the line. our time here is to help others through hardships. things happen to us so that we may better understand and be there to hold others up when they're too weak to do so themselves.

bless your heart!!! healing hugs to you too!!

i don't go to church as i am a free believer. i don't judge anyone's faith. i just feel in the end we're all praying, dancing, singing, casting spells to the same higher being and no one faith is the only right one. so i don't have the support of a church. all my friends here are busy w/their own lives and kids. it does upset me, and i really hate feeling sorry for myself, but i've babysat many times for free. i've always had a houseful of kids to help my friends out. i've cooked meals for people who were down w/an illness and left bags of food in cracktown so that someone down on their luck can eat. i'm really disappointed that when i've most needed help, it hasn't come through.

geesh. i'm sorry for the pity party. i'm having such a hard time dealing right now.

i can't thank ya'll enough for listening to me.

one thing i'm learning is that i must set boundaries once i'm well. i can no longer allow stress to run me. i won't stop helping others but i will set boundaries.

poor you!! what a heavy load you endured!! i'm so glad you had help AND survived!!

my husband refuses to listen. i read a passage from this very site about why i'm so physically exhausted but he seemed impatient so i didn't finish. it doesn't help if it falls on deaf ears.

i've learned the only person i can depend on is myself and once i'm well, i intend to do just that.

anger is an emotion i'm dealing w/a lot lately. i've always been a passive person. i am an empath which means i am capable of feeling others pain therefore, i have been incapable of letting people know when they've hurt me because i can't bear to hurt others. boundaries.

unfortunately, he's the only neurosurgeon in a wide area who does the coiling. because of all of you kind souls who have responded, and patiently listened to my rants and pain, i didn't know this wasn't standard procedure. i am angry that my care has fallen through the cracks of many doctors. my family doctor saved my life by having the ct scan done immediately. she called radiology at the local hosp and demanded the scan YESTERDAY when they tried to put her off. my neurosurgeon said my droopy eyelid and uneven pupils were "weird" and suggested i see an eye doc. i saw an eye doc who then said i needed to see an eye specialist. i saw one yesterday and was diagnosed w/horner syndrome which is a rare nerve disorder and most likely caused by the aneurysm. it isn't supposed to cause any lifelong vision issues and may self-resolve. i'm to see him often. if my eyelid doesn't fix itself w/in a year, he can fix it w/surgery. what bothers me is that i feel as if i'm falling through the crack between so many doctors so i've been updating my wonderful family doctor w/every new finding so that at least someone knows everything that's going on w/me.

i'm upset w/my neurosurgeon for several reasons although i do like him personally;

the headache meds he sent me home w/made me feel very strange. it's a barbituate (?) w/caffeine. i can't understand why i would need caffiene when i was supposed to rest and keep my blood pressure down. i had most of the hydrocodone (sp?) left from the walk in clinic and so i took them and noticed they helped w/the headaches much better than the med the surgeon gave me but he refused to prescribe it in lieu of what he gave me. the ibuprofen he also prescribed wasn't touching the headaches and it also tore my belly up. my family doc gave me a prescription of hydrocodone because she knows me and knows i am not a drug seeker and don't care for taking anything unless i must.

yesterday i called my pharmacy to ask them to call my surgeon and request a refill of nausea meds because i'm still very nauseous. since i was out of town to see the eye specialist, i didn't have my surgeon's phone number w/me to call directly. i got home to a call from my pharmacy telling me he refused to refill the nausea meds and said i should call my family doc and ask her. now, why would i call her when he's the one who did the surgery and should know what i need more than my doc would?

the drug seeker issue is something that really upsets me and i don't want to be perceived as such. my best friend IS a drug seeker and was stealing pain pills from people she cleaned houses for as well as spending at least $300.00 a WEEK on street pain meds. i called her doctor and told her she had a problem and begged her to help her. instead, she dropped her from her care. she had been giving bff 60 pain pills a month and bff was taking them IN ONE WEEKEND. i researched pain pill abuse and even talked to treatment centers and narcotics anon seeking a way to help her. narcotics anon told me if i didn't tell someone, bff was going to die. so i called her finance, a cop, and told him. she hated me for awhile but she got the help she needed. i know the danger of opiate addiction and have no intention of ever putting myself in that position. i realize how insidious the addiction is and the best of people can become addicted due to chronic pain so i'm not judging but ffs, i just had a very painful procedure and i'm still suffering w/headaches so please don't treat me as if i'm trying to wring every bit out of this that i can. does this make sense to ya'll? i'm just so angry that i can't get the medicine i need just for right now to help me through the pain.

grrrrrr.

thank you so much. and healing love to you as well.

i thought i had replied to your post too but i reckon i didn't.

i will come back in a bit.

i'm afraid all i have is negativity right now and i really hate feeling this way.

i hope i'm posting correctly. i would like to welcome ya'll to friend me on facebook if you'd like. be aware though - i'm pretty fiesty and have a potty mouth and post my opinions regarding animal and children's rights so my page is def not pg-13.

i am mamakat taylor on facebook and the email associate w/my facebook is ■■■■■■■■■■■■■■■■■■■■

My heart and prayers go out to you Kathy, If I can make a suggestion for the much needed help see if you can get one of your friends to call around to the local churches and see if the have a volunteer program at any of them. You might be surprised how far the hand of God stretches! I also found sharing "letter from the brain" with your family and friends lets them see into where your coming from. Im here if you need anything Prayers for the strength to make it threw today!

thank you! i'm amazed at the support, love and peace ya'll have given me. i felt so lost and confused. now i feel...... safe. and understood.