sharing my life experiences, reflections and insights as a mother, a writer, an Occupational Therapist and and a spiritual being having a human experience

Archive for the ‘Caregiver’ Category

Dealing and Coping with Mental Illness

One of my biggest challenges in helping my children with their mental health issues, has been doing so while dealing with my own mental health issues.  I have diagnosed myself with Bipolar 2 because the mental health professionals have failed me in that area. They diagnosed me with Major Depression despite my repeated information on my bipolar symptoms. One practioner wanted me to see if my insurance would cover generic testing, in part to see if Bipolar disorder was likely. I don’t need to take a test for that. My brother is diagnosed with Bipolar 2 and has been for a long time. My brother and I share much other genetic similarities. 

I have found in helping my children, that I have been more qualified than the so-called professionals with diagnosing myself and my children. Especially my youngest child who I know has OCD and social anxiety despite failed attempts with professionals to get these diagnoses. I am a health care professional after all and hey, who knows my children better than me? No one. I homeschool/ unschool them based on my knowledge of who they are so I guess we unschool mental health too. 

That being said, we do use professionals for assistance. We have a OCD specialist therapist who has been vital in helping both my daughter and my son.  But we have been unable as of this writing to find a well qualified Psychiatrist who specializes in OCD.  We had one that was competent and who we liked (we liked her even more after we went to other Psychiatrists) but she was self pay only and we already have enough debt from medical expenses. 

Back to my intent of this post….

Helping my children when I myself am suffering my own mental illness. 

When I look back over the years, there are large periods of time that feel like a fog and in those times, just getting through each day was a big challenge for me.  One area that has been a big issues is getting my children help or following through with referrals and other things when they are doing better. 

When your child suffers with mental illness, it is exhausting, emotionally and often physically. When, they are doing better, there is a feeling of relief and wanting life to “just be normal for a while” or more normal.  As an example of this, last spring, my youngest had a severe flare up of OCD, anxiety and behavioral issues.  We went to a hospital ER to get immediate psychiatric help but because he was less than 7, we could only seek a referral to a developmental and behavioral pediatrician or go to the local mental health behavioral unit which would have been at least a 3-5 hour wait without knowing if they could even help us. We opted for the getting referred to the pediatrician specialist which involved going back to our primary for the referral and then I called to follow up but did not receive any information from them for 6 months.  I repeat, it took the Develpomental and behavioral Pediatrician practice, 6 months to send us information in the mail to complete to be seen.  Well, 6 months later, he was doing so much better. We had started OT services as well as going to the therapist we already had for our daughter. I intended to fil out the paperwork.  I must add that about 4 months prior to this visit to the ER, we had taken him to a psychologist for evaluation, but she was unable to complete her evaluation due to his inability to answer all her questions and complete her tests. It took her a couple months to send her results to us which said nothing really that I did not already know. 

Back to the referral to the pediatrician specialist.  I truly intended to fill out this lengthy paperwork to get my son seen.  I even contacted a friend who had taught him in a class situation to help with filling out some of the information. Since we homeschool, we don’t have a teacher to answer things.  He also acts differently with me than with other people, so I thought her input would be helpful. She is also the person who first pointed out the idea that he has “social anxiety”.  Yet, I have yet to begin to complete this paperwork. Now, I want to get my daughter referred to this practice in my hopes that they will have experience with OCD, particularly child-onset OCD. Because, she needs a prescribing doctor to follow her on her medication. Our previous Psychiatrist, who we did not like at all, does not take our current insurance. 

So why did I not fill out the paperwork for my son when they finally send it to me, 6 months after I requested the referral?

The only answer I really have is: my own depression and anxiety. 

My own depression made doing daily activities difficulty and anything extra was really a stretch for me to complete. I just did not have the time nor the energy to do it. I wanted to do it. It bothered me that I did not complete it. I also think that I did not have much faith anymore that these so called “professionals” could help my son.  Having the experience of taking my time to go to the psychologist assessment and gaining nothing from the experience other than frustration with the incompetence of the psychologist with knowing how to handle a kid with severe anxiety and getting help for us, I had little motivation to pursue this next avenue of help.  

So was it my depression and Axiety that prevented me from getting the help for my son?  

Or was it because I no longer believed that the professionals could help my son?

Most likely a little of both. 

I took some steps today to get my children the help they need.  Despite the utterly inadequate NC government health care system, I soldiered on with 2 different phone calls and even talking to the person who is my “case manager” who I find particularly incompetent and unprofessional.    I know know that I need to do research to find a psychiatrist that takes our current insurance, NC assisted: NC Healthchoscie for Children (when your income is too high for Medicaid). They had Medicaid until the beginning of this year. My husband is self employed and my prn work status does not qualify me for health insurance through my employers. I work 2 jobs. 

I also plan to find that paperwork and fill it out for my son too. Hopefully, I can find it, buried in the piles of paper at my desk. And I do plan to ask my friend to help me fill out the information. She now has seen my son at least weekly in class and might have some valuable insights and opinions to share. 

So this is my affirmation to myself to make these items a priority. 

If you also deal with mental health issues and have other family members with mental health issues, I would love to hear your challenges, thoughts and insights.   Let us help each other. 

Cuatro De Mayo: Celebration of 5 years of Rebirth

On Wednesday, May 4, 2011, my 51-year-old husband suffered a massive heart attack in our home, coming in from moving the lawn with a weird pain in his upper back on the right side which later traveled up his neck and around his ear.  His RIGHT arm was cold and clammy. Despite, my years of CPR training required for my work as an Occupational Therapist, it took me a while to realize that this was indeed a heart attack. His symptoms were atypical. It is usually the left arm and later, the doctor told him, “you had a heart attack like a woman”.

I remember searching in the basement for my bag from when I worked in home health care- over 5 years earlier- for my stethoscope and cuff.  I remember his pulse was faint and slow. Looking back, I don’t know why it took me so long to call 911.  Don had no idea he was having a heart attack.   I finally called 911 and frantically searched for aspirin that I knew we didn’t have when the 911 operator asked if we had any aspirin.

About 5 minutes after the medic arrived, Don went into full cardiac arrest.  It looked like he had a seizure and he became unconscious.  I remember the other medics arriving just as this happened and remember them rushing us out of the living room where we all had been standing and watching as Don went into full cardiac arrest.  I recall walking the children around the corner into the kitchen and sitting on the steps and I began tapping (EFT).  Looking back, I believe the only way I was able to do this was that Don’s spirit was alongside me.

I could hear the medics and understood everything they were saying.  I listened intently to them as I made an effort to comfort my kids.  They used the defibrillator and I could hear them say,“he has a pulse but it is faint”.  If memory serves me right, they used the defibrillator 3 times while he was in the living room before they moved him out to the ambulance to get him to the hospital.  He was in ventricular tachycardia when they left and his face was dark blue. 

 I am forever grateful to the Robinson’s Volunteer Fire Dept. and that medic who stayed with me and asked me, “Do you have someone you can call?”  

My mind went blank. Who should I call?  He asked about family or friends.  I had many friends but tried to think of someone who lived close.  I then though of Lia who lived only about 10 minutes from me and called her and her mom took a message which she quickly got to Lia.  Lia arrived quickly and drove me and the kids to the hospital.  The medic offered to follow me to the hospital, but I knew I needed someone else to drive.  And then Lia could stay with the kids.  As I type this 5 years later, I can picture it like a movie in my mind.  I remember Lia’s calmness and her suggestion to drop me off at the emergency room entrance and then she went to park the car with the kids.  I vividly remember walking into the hospital and asking to find a bathroom first!  I wrote a post on that one.  Then I came out and asked where he was.  I remember standing just outside a small room/ ER area and the doctor telling Don, “you had a heart attack” Don was awake but did not see me and gave the doctor a crazy look when she told him he had a heart attack.  They told me they were bringing him to the cath lab.That all seamed to happen in less than a minute.  They rushed him upstairs and I never got to say anything to him.  He has no memory of that experience.

The next 2- 3 hours were the longest hours of my life. They first brought me to the cath lab floor to a very small room to wait.  I told them that my friend would be coming up with my three kids and was there somewhere bigger we could wait.  They then brough me to the cardiac cath waiting room which was empty due to it being after 6pm.  The nurse or someone had told me it would be about 2 hours and when that time passed, I started to panic.  And Lia, with her calm sense of problem solving called the front desk, or maybe she suggested I do that,finding the number for me and later we learned, that they did not realize we were waiting there because usually after hours, they have family wait in one of those small rooms like they first brought me to.

We watched Idol as we waited because that is what we would have been doing at home. We had been watching American Idol as a family for a few years. Abby needed the distraction.  We ate peanut butter crackers from the vending machine for dinner.  Lia had lots of change on her.  She really was my angel throughout this experience and I don’t know how I would have done it without her. 

You can follow the rest of the story below. 

I will now share a post I started sometime after he returned home from the hospital. This post  was dated December of 2011 before I updated it.   It is a post that I started, but never finished nor shared.  I am sharing it now as we celebrate: Cuatro De Mayo, Don’s 5th anniversary of rebirth. 

I began journaling through the experience of my husband, Don’s  heart attack through Facebook posts.

I began the posts as a way to quickly update family and friends about Don.   I later realized that the posts could also serve as journal entries for my “in the moment” feelings and thoughts.

So now, just over 12 weeks later, I am looking back on my Facebook posts and will share them here.

Note: It has been nearly 5 years since Don had his heart attack.  I started this post copying all my posts from May 4 through May 10 including a blog I wrote.  Now I want to add the remaining posts for May 11- 16 to include  all the days he was in the hospital. But I have to figure out how to do that! So until I do, I will share it as it is.

This is a chronological listing of my Facebook posts. When I first did this, I went back and even included my comments in reply to other people posting to me. I left the posts “as is”including mispellings.  I added some things for clarification in parenthesis.   I also have a few times summarized a post like a conversation with Harrison that we had on Facebook. When Don had a heart attack May 4, 2011, Harrison was 13, Abby was 9 and Jason was 2.

May 4     8:56pm    

please pray for Don. he had a heart attack and is the hospital at Presby Main. all here right now. he’s in cath lab..talked to nurse waiting to hear from doctor.

May 4     10:10pm

Don is stable. waiting to go see him

May 5     4:23am

don is doing better but still in CCU and will be there several days. I Got to see him Ad talk to him and then we came home.kids did not (see him). just called to check on him. he’s improving. will know more later . going back to hospital soon. thanks for everybodys prayers. keep praying

May 5 at 7:29am

here with Don. he’s improving. in CCU all today. he can eat now. feeling some relief

May 5 at 9:07am

Thank God for 911 and the medics with Mint Hill and the other station. and the Cardiologist and nurses and team here at Presby. so glad I live in a big city. and all my friends and family and being here talking with Don and knowing he is improving.

reply to a comment:  Thanks Michele. Holding up ok. He is talking and eating and joking. Still in Cardiac care unit for t least a day or two and then to step down unit.May 5 at 10:38am ·

May 5 at 3:36pm

trying to figure when to go to hospital again and dinner for my family (with all our food issues)

reply to comments and friends offer to bring food:

You guys are awesome. I know Leslie mentioned shopping. There are things at Trader hoes (Joes) we need. We can eat some wheat but we have been eating gluten free and my biggest concern is Abby and not changing what she has been eating too drastically. She has been gluten and egg free and the other big thing with her is no preservatives and artificial colors…
Rice and potatoes and vegetables. Potatoes of all kinds…fruit is great for H and J. They eat a lot of fruit! And we do eat Ezekial Bread…found at most stores in frozen foods.

And Abby loves meat. Yet with her OCD /abxiety issues I am not sure what she will eat that others have made. She still has not been able to eat out.
I am so happy for meals right now cause I an not sure how I an getting through this other than this is far better than the alternative.May 6 at 4:44am ·

I am trying to ask for help (not easy for me) cause the other thing I may need…and right now I have my parents here til sat and then my sister in law comes in Fri – today thru Tuesday. Will be help with day to day at home…cleaning up…for those that k ow me, housework is not my thing. I love doing laundry but other than that…
I an trying to think ahead cause I know it will be great with my family…my sister in law is a nurse but she lives in St. Louis and so when she leaves…is likely to be about when Don comes home and right now that idea overwhelms me.
I am taking it one day at a time. I an just trying to reach out because that is not something I do well. And ask for help when I feel strong enough to ask for help (cause asking for help aibt easy fir me!)….but man am I learning fast!May 6 at 4:50am

May 5 at 6:18pm

back with Don at hospital. he continues to improve.

May 5 at 9:28pm

a picture of Abby and Olive- Olive in Abby’s ballet skirt

May 5 at 10:50pm

loves my family and friends. don – I love you. healthy healing heart ..tap tap tap

reply to the comments:     Thanks everyone! You know I love prayers in every form and every religious or non perspective! And healing energy and all of it…its all energy I think its all helping. In so many ways its amazing he is still here and improving.May 6 at 4:53am

May 6 at 5:08am

I would like to post a picture of my mother and also one of Don and I….can’t seam to find many pictures other than of my children…May 14 is Don and my 17th So glad my honey is still here with me….just trying to do what I need after a good 5 hour rest , while everyone sleeps… My new mantra”the past is behind me… only look and move forward”

May 6 at 5:14am

Dancing with my love at a family wedding Abby about a year asleep in my arms.

(changed my profile picture to this picture of Don and I dancing at a wedding with Abby asleep in my arms)

May 6 at 5:47am

one more source of help could be friends coming to be with kids in waiting room while I an with Don. we are going to hospital later

May 6 at 12:13pm

whoever can help me buy meeting me at hospital to be with the kids in waiting room while I am with Don. call me

May 6 at 5:24pm

thank you Lonna and everyone! anyone who can meet me at waiting room to hang with the kids over the next few days

May 6 at 10:51pm

having a good night after a rough day..fatigue hit me today. sister in law angel arrived. Lonna angel met us at hospital…talked to more friends. dons improving. hoping to sleep more tonight. Needs: taking trash to dump. strong person to lift battery so we can put lawnmover away

reply to comments:  Rough day for me. but Don is doing well…improving well.May 6 at 10:56pm

later reply to comments:  Thank you all. forgive my impersonal reply. FB and my BB are helping me through. I did sleep a good stretch. The adreneline high I was on, has ended to some extent although when I wake up, I figure I need to get out of bed and do something cause I will likely not fall back to sleep quickly. and need food and waterMay 7 at 4:43am

one more:  plan to go back to lay down in a bitMay 7 at 4:43am

May 7 at 4:41am

Slept about 11:30 til 3:30 woke with some bizarre violent dream. Called hospital, don is doing well and sleeping Yea! and he relieved his bloated feeling earlier (you know I work in health care and so I may come across weird with what I post).
The Presby nurses are awesome and answer all my questions cause I need to know as much detail as possible having an anatomy background and all.
J ust wish I could be at hospital 24/7 but it feels good to be home and be here for my kids too. We are all sleeping in my room and have gotten all to bed within 30 minutes or so once we are up there. Feels good to have them close.

reply to comments:   “Thanks Kamilla he is doing well and improving yet it will be a slow recovery and he has another artery with blockage that they have to reasses and in one month check for permanent heart damage. (figure you may understand some of this being a nurse). Getting lots of great help right now.May 8 at 9:55am ·”

May 7 at 5:00am

I need to get real organized real fast. has any one heard about or had experience with Inclusive Health.org? I was told it was a state program to get insurance for anyone. we have a major medical plan covers hospitalization at 80% but no follow up coverage and no coverage for cardiac rehab insurance agent told me to contact them and they will cover anyone.

May 7 at 5:20am

went to inclusivehealth.org NC sponsered company for coverage. went to find a local agent and list is very long for Mecklenburg County…anyone have any experience, know of anyone who has used them or an agent?

May 7 at 6:22am

found a rep in Mint Hill, sent a message. Feels good to be getting some of these things done. more sleep later in day. food and drink got rid of headache, time talking with my Dad. guess time to shower while everyone is still sleeping. plan to go to hospital by myself today once Jason is up and settled. going to let him sleep as long as he needs after two difficult early mornings. breath…..

comments:   Don should get PT today and I really want to be there when they come byMay 7 at 6:22am

comments:  “the past is behind me, keep moving forward”

May 7 at 6:22am

May 7 at 1:34pm

got to spend time alone with my honey. he got to sit up in a chair and walk to toilet. he is progressing well. he got sleepy and needs rest.

reply to comments:  “We appreciate all the prayers and well wishes and I a. Happy to let everyone know how he’s doing. Don’t mind people asking either.May 7 at 2:23pm”

reply:  “Thank you. He had stints put in right away. We won’t know if he needs more for a few months. He has to recover before they can even see how much damage was done to heart…that will be a good month before they can check that.May 7 at 11:09pm”

May 7 at 4:09pm

home with my family…my parents left. have my wonderful sister in law here. my house has. never been so clean and we have clean laundry! kids have had playmates. will go back to see don. he did sleep some

reply to comments:  “Thanks Joyce. Helps to hear that. Happy Mothers Day to you. We have lots of positive thinking going on. He lived and that is all that matters right now…he survived that..we can get through anything. Best mothers day gift ever…my husband alive and doing well.May 8 at 9:53am

-May 7 at 4:51pm Harrison uploaded a photo of Don and I (more recent photo) because I wanted it for my profile picture

May 7 at 11:12pm

we all went to see Don tonight and he was feeling much better and had slept and got to sit in a chair and visit with us. it felt wonderful. kids made him pictures. we love you Don-daddy!

May 7 at 11:20pm

I have the best mothers day gift ever…my husband is Alive and improving and I get to go spend time with him early tomorrow. challenges bring perspective …I am so grateful

Inquiry about if Don is  still in same room-

My reply:  “Yes but he may be moving today in morning don’t know when. But will move to cardiac step down unit. He apprecited you coming and is ok with visitors…he wants the distraction. Just short stay esp if he seams sleepy. He has not slept much. He slept best yesterday and was doing real well last night for our family visit.May 8 at 2:50am”

May 8 at 3:14am

just talked to Dons best nurse…Sharon we love you! and I am feeling relief. I can bring him any foods. she will get social work consult for us. she understood what probiotics are. Ahh……and she was there when the other nurse looked at me H and J and said “no children under 12 allowed”- and let us in. Daddy needs to see his kids and they him…its part of what is healing him along wirh modern medicine!

comments:  “don’t anybody tell me Don can’t see his kids! I understand the hospital policy but love trumps policy. I Will keep j in my arms in hall. Just one more day of CCU then that won’t be such an issue.May 8 at 3:17am”

Comments:  “Its just hard with all we are going through to wallk on the unit with the kids and have everyone look at you with that “why are those kids on this unit?” and I just want to shout. We are visiting their Dad! You don’t know what they saw at home with the medics….they need to see him and he needs to see them. Its part of our healing…Dons included!!!!!!!! Modern medicine is wonderful and so is love!!!!!!!!!!!!!!!!May 8 at 3:19am”

comments:  ” Its these little things that are tough on me right now. Seeing my needs more and. More as I am out of SURVIVE mode and now am moving on to other emotions and boy is it a roller coaster. But I got through him almost leaving us…I can get through anything now.May 8 at 3:22am”

May 8 at 4:13am

Sat May 14 is our 17th anniversary. I am so glad my honey is here with me! He was last in the hospital 17 years ago on our honey moon, ask us about that funny story. I love him so much.

comments:  I had a conversation with Harrison about cropping the picture for my profile picture and then about how Jason is doing.  my final comment back to him:   “Thanks. I can likely come home before he needs a nap and then come back over here. But while he is happy I will take some quiet time and be close to Dad. But will likely come home sooner rather than later for his nap…so I can nap too and then we can come back or at least I can or Ann can or something.May 8 at 9:00am”

May 8 at 4:23am

Happy Mothers DAy to my wonderful Mom! It was so helpful having you here when I needed you most. I wish I could find a picture of you to post as my profile, when I scan my pictures, all I find is the kids….:)
You are the best mom and the reason I am the mother than I am.
I love you Mom.

May 8 at 4:42am

I have started blogging about this because I know I have to and need to. And I don’t need to hide my writing but share it for anyone who wants to read it.

ginaslifejourney.wordpress.com

Perspective. Having your 51 year old healthy husband have a sudden heart attack and go in to cardiac arrest in your living room with 2 kids, age 2, 9 and 13 standing by (and thank God, the medics who had gotten there before he arrested) is a life altering experience to say the least.   …
Ahh…..talked to Dr. Iwoka. he is moving to step down today. things are going well. I like him for more than just saving the love of my love and best friend.

my reply to comments:   ” Thanks Adael! Happy Mothers Day to you. This was the most I got to talk with the doctor and watch him assess Don. Our nurse told us he was rated the Best Cardiologist. Helps to hear that. And I like how he answered my questions. It eases my mind.May 8 at 8:57am”

May 8 at 9:43am

Happy Mothers Day to all the mothers and those who act as caregivers and mothering roles….including my sister…the best big sister anyone could have

my comment:  “And my husband is included in this”

May 8 at 9:47am

*converstaion with Harrison about how Jason is doing and me waiting for them to move Don

May 8 at 10:03am

hanging in waiting area while Don tries to sleep..looking out window thinking ..one nurse told us CCU used to be labor and delivery and likely was 131/2 years ago when Harrison was born. he may have been born very near where Don is on CCU…has a spiritual kind of comforting feeling to me in a weird and maybe silly way….

May 8 at 10:10am

was able to peek in window and not click door…Don is sleeping so I am letting him rest. think ill take a walk and get my jacket in the car…its freezing in here!

May 8 at 11:14am

Jody posts a picture:

Princes Harrison and Jason with their crowns

May 8 at 12:05pm

Dad in his new room (picture)

May 8 at 12:26pm

Don is moved to Step down. things are good. great nurse here. think I will head home for a bit. this is a big step! yea!

May 8 at 2:04pm

and sometimes I need to cry and let it all out….I guess the whole thing is just beginning to sink in or are moving out of a state of shock…and over tired….I know all will be well but its ok too to say this really sucks

reply to comments:  “Yes tears are good…a release of energy and I an glad they are coming.May 8 at 4:12pm”

and another reply:  “Love all the hugs and thoughts…helps me outMay 9 at 12:33pm”

May 8 at 4:13pm

slept well and feel refreshed…boy I needed that. Ann and h and J<supposed to say A> going to see Don. me and J going soon yet cool to be home with just my J

May 8 at 7:32pm

don doing great! love his new nurses on 3D. going home for dinner with my family -1. don needs rest.

May 8 at 7:57pm

thinking about tomorrow and play mates for jason …

May 8 at 8:34pm

need to spend lots of time at hositsl next two days as Don may come home tuesdsy and I need to tslk to nurses.

May 9 at 4:41am

Out of shock and on to next stage. still counting all my blessings yet nervous about next steps of this endeavor.

didn’t get to finish my post…3D nursing staff is awesome! Presby hospital has been awesome. Feels good knowing he is in good hands there. He might be getting PT today! Eager to get to hospital and be there all dayMay 9 at 4:43am

May 9 at 5:17am

I am thankful for prolactin 🙂

May 9 at 8:18am

Don is tired today and has low grade fever. he sent me message but it wears him out to do so. can’t wait to go over to see him. kids are all still sleeping here as I BB next. to them…we are all in one room together.

May 9 at 12:39pm

at hospital with Don. he is resting but doing as expected. fever is not a concern. he will be going to cath lab tomorrow t0 have other blocked artery stinted. then will come back to room he is in now. it is about an hour procedure according to nurse (and Much easier this time since it is not an emergency)

May 9 at 5:01pm

home now. don is tired but doing well. we don’t know what time he will go to cath lab in the morning. 7am or later so I will be there by then. mom is coming back later tomorrow. got a friend who can come early and stay the day. I will be good to have the stint done to open the othwr artery and know that is behind us yet is a new venture to process and think about.

May 10 at 1:19am

got some sleep. my 3 angels are sleeping all next to me which feels so good. Ann visited Don tonight and he is doing well yet very tired. procedure sometime today…7am or later. ill be there and Will keep ya’ll posted. (I can’t believe I just wrote ya’ll…I must be a southerner now…been here 18 1/2 years!)

May 10 at 2:17am

Blogging again about this experience.

ginaslifejourney.wordpress.com

I sleep maybe 2 or 3 hours and then lay there with so many things going through my mind so I get up to get something done because there are many things to do.   …
reply to comments:  “Thank you. It means so much and I know all the energy and prayers are helping as much as modern medicine is. There are miracles happening every day all around me and I feel so blessed.May 10 at 2:40am”

This is part of an email I sent to a friend on May 9, 2011, just 5 days after my husband had a heart attack.  I have added some additional information in<> to clarify the message but otherwise kept the message as I typed it to my friend because I feel it shows the emotion I was feeling so early on in this experience.

“I think I was in shock for several days when this happened.  We had no idea he had issues other than his family history but he is the youngest of 6 siblings. We eat so healthy and he exercises…etc etc.  I don’t know how I got through him arresting in our home, thank god the medic was already here when he did and then waiting in the hospital for over 2 hours with my friend and kids, when we should have been home watching American Idol, and wondering if the doctor would come out and tell me he was dead.  I watch too many ER type shows, Gray’s Anatomy.  I didn’t even cry that first 24 hours or until I was driving back to CCU the next morning alone.
It is a relief to say these things.  I have great support in many ways but to be able to talk about this esp with someone who gets my parenting style , has good communication skills :)and with someone who has been there helps me a lot.  I know I need to call you.  Right now we are all nervous about him coming home. We want him home but after our traumatic 911 experience, <I’m nervous about him coming home to our family which includes>  my 9-year-old with OCD and my 13-year-old (his own much milder anxiety issues) and me.  I picture myself standing over him checking his vital signs every 30 minutes.  I am thankful I am and OT and feel fine with understanding his rehab, but the medical stuff scares the crap out of me.  I have to reassure my kids esp my daughter that we will have all the instructions we need from the hospital about signs to watch for but inside I am terrified.  I wish I could be with him 24/ 7 right now while he is in the hospital but feel safe   especially now that he is out of CCU with where he is .
ahh…wow…I do need to talk about this…and for me writing is even easier than talking…thus my blog  but I also need to call you and have someone who can really listen “

Coughing into a new speed

‘Tis the season…

Three and a half weeks ago, I came down with what felt like the flu and it progressed into this coughing, bronchial, coughing, low fever, no energy illness.  Did I mention the congested coughing that did not go away but got worse?

My husband is working from home and in the process of completing some training for a new business endeavor and so he is home often and was able to take care of the kids and most meals most of the time. Which means that I had time to rest or as much time as a mother of an active toddler and two older children can rest.  I got to stay in my room or in a recliner in the living room (since sitting up seamed to be much better than laying down) yet the illness lingered far longer than any illness I’ve had.

Unfortunately my favorite go to health practioner, a chiropractor who practices Traditional Chinese Medicine and who I have been going to for 10 years, was out of the office for the first week and a half of my illness.  I did begin to slowly get better but it took three visits to her, many herbs and more rest and as I type this I still have a cough and will likely schedule one more appointment early next week  just to be sure I don’t relapse again.  I had one day where I felt good enough to take my children to the park where our friends were going and enjoyed myself but then felt 10x worse the next day.

So where am I going with all of this?

I haven’t been able to get out of the house for my weekly time away to myself and writing time.  I did manage to use my lap top at home but mostly to play games and busy myself with Facebook just to pass the time.  Sometimes you don’t know how sick you really are until you get better.  I really had no energy and so I feel far less guilty looking back on the time I spent watching Grey’s Anatomy and playing games because I just did not the have the energy to do much else.

I still need to pace myself.  Today I worked 4 hours at my outside the house job where I haven’t been in almost a month due to being sick and then got my hair cut and my husband took the kids so I did some Christmas shopping but then felt myself getting very tired.  I am tired as I write this, yet it is more relaxing to be sitting here at this restaurant wi-fi spot writing than to return home where there is always a child who wants my attention or needs my help.

I think where I am going with this is….

…learning to pace myself

No matter how busy life is, how many things we need to do.  And do we really need to do all those things on our list?

I had a big fat reminder of what is important in life, my crash course in perspective, just 6 months ago when my husband had a nearly fatal massive heart attack.  And out of the blue, I might add as he had no health history other than a family history of heart disease but like many people, he thought he was fine as he was eating very well and exercising.

When he was in the hospital, it was all so clear: what was most important in my life- taking care of my husband and my kids.  I asked for help when I needed it and for those 12 days when he was in the hospital, I was asking often!

Then he came home, and new challenges arose as we renegotiated our roles and figured out  how to live our “new life”.  People ask me if my husband is “back to normal”.  There is no going back, no more normal.  He is physically doing great and better in that way, but life is different now and will always be.  A sudden, serious life threatening event, changes life as you know it forever.  In many ways, that is a good thing.  Yet, it brings new challenges and new issues and there remains the lingering fear of what if that was not really there before, not in the magnitude and reality that it now exists.

Time passes from the “event” and you find yourself in a similar mode as you functioned before the “event”.  My husband tells me every one refers to his heart attack as an “event”, and I just find that funny.  In this case, I use it as it could refer to many different kids of life changing, traumatic events.

Then I  became frustrated that I  appeared to be “back to the way things were before”, but not really because when he was in the hospital, I swore that life would be different or at least I saw a new perspective of life and knew I would never be the same.

And so, 6 months after his heart attack, I came down with a respiratory illness, infected lungs…so fitting from a metaphysical perspective because lungs process grief.  Sometimes there is delayed grief or lingering grief.  Sure, my husband lived and made an amazing recovery and I am forever grateful for that.  Yet, I do not need to deny myself or anyone who has gone through a similar experience, that there is still grief.  There is still the lingering memories and questions and fears and doubt and worries.  My husband remembers very little about his heart attack, he didn’t even know he might be having one and then went into cardiac arrest and so remembered nothing for about 4 hours until he was in recovery in the CCU and his memories of those days in the hospital are sketchy and even his initial return home is a bit of a foggy memory for him.

I on the other hand, remember most of it all too well.  Sure, I was in shock initially and so my recall of the initial hours are a bit different from how my son remembers it and surely he was in shock too.  Yet, once we got to the hospital, I can feel it and recall it like I am still there as well as most aspects of what transpired before they took him to the hospital.

I feel like I have written about this so many times before.  Somehow, I have a need to tell this story and share my feelings and experiences.  I think it is my way of processing my grief, my lingering grief.  Maybe what I am saying sounds much like when I have written about it before and yet for me, each time I write, it helps me move forward and release those aspects of the experience that hold me down, weakening my immune system, allowing a cough to take over my life.

I think the biggest lesson I need to take from all I have written tonight is to continue to…

…pace myself.

To slow down, no matter what is going on in life and not matter how important I think the tasks at hand are to me or my family.

For nothing is more important than health and life.

If we do not take care of ourselves, our body, mind and most importantly, our soul, then it will have an effect on us.  Maybe not immediately or even in the near future, but it will in some way, impact us and most likely in a negative or possibly harmful way.

I have something new to add to my mantra….

The past is behind me, keep moving forward….AND… pace myself !

Illness and Gratitude

Today, I am grateful that I felt good enough to leave the house.

I at least felt like taking my oldest son to his Monday afternoon classes would be easier than staying home with my younger two.

I love all my children but I have been ill for the past week.  Some sort of respiratory, crazy coughing, feeling yucky, low-grade fever things.

It is much easier being a parent of a 14-year-old when I am sick.  My toddler has brought entertainment to me over the past week, visiting me in my room and bringing a smile with all of his cuteness.  Yet, there is a point when his presence changes from a “cute visitor” to someone who I need to keep an eye on or who is getting into something and I don’t have the energy to distract or engage him.

My 9-year-old daughter has found a new love with poetry and it has been a  joy to hear the things she has been writing.  Being sick sure slows you down and simplifies things.  I like that aspect of being sick, or at least I embrace that aspect.

After the challenges of the past week, I can now be grateful for:

  • breathing
  • sleeping through the night
  • my health
  • waking up from sleep just to go to the bathroom or get a drink
  • taking care of sick children
  • waking up in the morning to start my day
  • waking up at night to help a scared or hurting child
  • making breakfast and cleaning up the kitchen
  • playing with my children
  • going outside even on a cold day
  • breathing
  • laying on my back and being comfortable
  • laying in bed, unable to sleep, yet feeling good
  • taking care of myself
  • eating healthy
  • living my life
  • Did I mention breathing without coughing?

 

 

Powerful and Timely Reading, 6 months later

Tonight,  I sat to write because I knew the grief was getting to me, the persistent cough and illness that would not go away. And after I wrote several posts that no one may never read, or not right now, as I let it all out, frustrations and aggravations I have been feeling for 6 months. I spared no ones feelings, well, this is still me writing, but I really let it out.

And then I moved on to researching something which I decided to share on Facebook as a note and then I read this post, the last note I apparently wrote but it jumped out at me on my screen: my own words needing to be read by me. Here it is unedited, just as it was written in the moment, on my 17th anniversary while my husband was in the hospital recovering from a massive nearly fatal heart attack (much more fitting than “event”).

 

Working Through Anxiety and Panic

by Gina Menzo Grothoff on Saturday, May 14, 2011 at 7:04am

Working through the anxiety and panic:

One step at a time.

From the first moment, I was in a place of calm, with my mantra:

The past is behind you, keep moving forward.

 

Recently I have gotten ahead of myself, projecting into the future,

playing the “What If?” game.

I learned fear serves a purpose, it teaches us to come back to now, to the present moment and use the fear to tune into our feelings to make decisions.

I began floating on cloud nine, tuning into my feelings for everything.

I saw signs everywhere and felt so connected.

I knew Don was with me always on this earth or not and felt him talk to me as I walked the halls of Presbyterian Hospital while he rested in his room.

 

I got a bit lost in all of it, and lost my grounding and my focus on the other component of tuning into now: being in your body.

Being in this world but not of it.

I needed grounding.

And so from my adrenaline high, I came “crashing down”

into my body.

Anxiety and panic brought me back to my body and to pay attention.

Yet, anxiety and panic fed into the “Waht if game” along with people telling me, it is normal to have panic attacks after a crisis and hearing “you may have them for a long time, even 3 weeks”.

 

It is all good. I needed to hear all of it.

It brought me to take care of my body more. To stop and refocus.

And then as I took care of my body more, with nourishing foods, going to acupuncturist, drinking more water, paying attention to possible blood sugar issues, and taking some herbs when necessary to help with the anxiety.

And of course the trusting that this is a process, and there will be stages but I can’t pretend to know what it looks like, even if I have “signs” coming to me.

I can say, “Isn’t that interesting.” hold onto the vibration of the positive and stay here and now and not focused on the future.

 

Much harder to do than it sounds.

Tuning in to my other needs, my spiritual connection needs was as important as taking care of my body. I talked to the people who I most connect to spiritually.

It all brought me back to focus and to more energy work.

And the EFT (Emotional Freedom Technique) brought me back to myself again last night. After having two nights with panic attacks with me way outside my comfort zone, I was anxious about the night and sleeping.

It all tuned me in to what work I needed to do with EFT, to release my fears and let go of doubt, guilt and limitation. I began to incorporate what I had learned with the anxiety and panic attacks. I had difficulty going to sleep, and so I connected on facebook by posting my truth and checking email and messages to be in the here and now and receive the love and prayers that others were sending me.

When I woke up after short sleep, and noticed I felt dry and thirsty and a bit of low blood sugar signs, I got myself something to eat and drink.

And felt calmer and then wrote more which further connected me.

Back to sleep, still having fears about sleep which I needed to work through and release all the pent up feelings I had been having.

I did EFT while laying in the bed, releasing my emotions with tears, while my three angels slept around me in my room.

It took a bit, but I was able to work through it enough to sleep again.

When I woke, and felt anxious, I allowed the fear to lead me, did research and sought some answers which all brought peace.

 

I woke up with a new greater understanding.

 

You see, yesterday morning, when I woke up, I was ready to see the reality of cardiac arrest.

(more later)

Are you an Energy Vacuum?

I belong to an online journaling community and have been re-reading my journal entries.  It is therapeutic and also helps me to find topics for writing.  Today, I found the following sentences in an entry from a year ago:

“I do not need to suck in his energy.”

“I think I am an energy vacuum. I tend to take on others energy.”

I have identified this trait in myself, how I can suck in others energy. If I am around uplifting, inspiring people, I often feel empowered and positive.  And if I am with people who are negative and lost in the victim-hood role of how the world has done them wrong or how their children never listen or their husband just doesn’t understand or….  well, then I may find myself feeling similar emotions and finding everything wrong in my life.

For this reason, I have always  enjoyed being around people of like mind and finding others who “vibrate at a higher level than myself”- meaning, those who are further along the spiritual path- those who have similar beliefs as myself who are where I would like to go- people who are being the kind of person that I choose to be, that I aim to be.  I found this frequently when I first attended Unity as well as when I first became a parent and also when I first began homeschooling and involved in the homeschool community.   As I evolve, the people who “raise me up” change as well.

I also enjoy being around all people, most people.   I enjoy getting together with other homeschoolers of various beliefs and methodology.  I choose to homeschool my children to provide them with more opportunities of real life than they would get in a classroom filled with people all born in the same year.  I look for more diversity for my children.  I like living in a large city.   I have always enjoyed meeting new people.

I have met an uncountable number of people in my life.   I lived in 4 different cities growing up, spanning 3 states.  I moved away again for college and then after graduating, I  up and moved once again.  In the work I have done over the past 19 years as an Occupational Therapist, I have met many people, many people, far more than I can count!

And since having children, getting involved in La Leache League, later becoming a Leader, joing and being involved in Unity, serving as Co- Youth Ed Director at Unity,  along was well as homeschooling my children and creating a homeschool website all have led me to meet many  new people.

It has taken me over 40 years to truly understand that different people play different roles in our life.  We need to see each person for the role they play in our life and not expect more from them outside of the role they play.  We also need to realistically see the roles they fill in our life, the specific things they are and have done for us and how they enhance our life.   By this, I mean more specific than sister or mother or friend.  I learned this lesson when my husband, Don,  suffered a sever heart attack and was hospitalized for 12 days.  Large numbers of people, friends came to my aid, more friends and help than I could have imagined.

I also learned I couldn’t “unload” all that I was going through with everyone.  Each person in my life filled a need and this was all so clear during this time period when Don was in the hospital.  At first, my goal was to meet my children’s needs.  I needed to be at the hospital as much as possible to help my husband and so I sought people who could go to my home and be with my children and take care of their needs.  I had family who came to stay and took care of laundry and meals.  I found friends who enjoyed my children and came to spend time with them.  And then, as time passed and I saw that I was becoming emotionally, physically and mentally  drained beyond an average state, I identified those people who I could reach out to who could help uplift me spiritually and emotionally.  Those people who I could be most honest with, people who knew me well, and who were good listeners.  People who I used to search for and identified  as  “best friends”.   Frequently in my life, I did not feel like I had any “best friends.”

I see it with a new perspective now.  All those wonderful people who helped me and my family in our time of crisis are all good friends or “best friends”.     Some of these people are acquaintances and some are those I have known a long time.  Each filled a role and helped me and did what they could do “best” for me and my family.

I look back on that time when my husband was in the hospital  in amazement.  I was so focused those 12 days.  I was being the parent I had always hoped to be.  I was being the person that I aim to be.  I was in the moment and living life, one moment at a time.   I would not re-do any of it and would not go back in time because of all the challenges that followed.  It was a crazy time and so many aspects of that time period I would not want to live over. Yet, I miss  the simplicity of life and how well I handled all of it.  I miss the simpleness of life at the time.  I was either at the hospital taking care of my husband or home taking care of my children and then somewhere in there, as I learned the hard way, I had some time to take care of myself.

Maybe I enjoyed that time because I was so hyper-focused on MY LIFE and MY PROBLEMS and felt almost no embarrassment to ask for help from others.  I put out countless emails and messages to my friends and the homeschool community asking for help including, people to meet us at the hospital and hang out with the kids, for people to come to my house, for people to take my children to activities, for a recliner chair and even help with food and shopping.

Because I was so HYPER-FOCUSED  on my life and my needs, I was very much empowered to live MY LIFE.

I say this in contrast to the person I usually am, who is busy helping others.  I did not have time to take in the energy of others, to get lost in what was going on in their lives.  Not that being involved in others lives is bad, not at all but for me, I tend to get “sucked into” others lives and their energy, including people who are negative.  I tend to be a good listener to others so often that it feeds my issue of feeling invisible and unheard.   I often let my needs to unheard, I often don’t speak my mind and say the things I need to say especially in a social gathering of several people.

And so for those 12 days in my life I had an excuse, an out, to not worry about others and take care of myself and my family and ask for all the help I needed.   I see the gift in that experience now as I write this.  I can look back on that time and make an effort to take from that experience the aspects that can serve me now.  I must remind myself of that lesson I learned- the roles that people play in our lives and not expect all people to be all things to me.  And I must remember the role I play in each of those people’s lives and live that role fully, whether it be listening to them or choosing not to listen.

It is a balance.  It is not about giving or taking, but both.  Give and take.

Yet, focusing first on ourselves and our needs, first and foremost, can only serve to help us be a better version of our self.

How can we help others if we can not first help our self?

It brings up the line I like to quote from the airlines:

“You must first put on YOUR oxygen mask before you can put on the oxygen masc of your child or the person next to you.”

We must first meet our needs and in doing so, then we can help others to meet their needs.

I still enjoy meeting new people.  I am busy with my local homeschool website that creates a community for area homeschoolers to find information, resources, support and connections.  The site has over 1200 members and is growing quickly.  Each person has been individually approved and welcomed by me or another administrator (there are only a few).  I like getting out with  my children to field trips and relaxing days at the park.  I like talking to other parents.  I like spending time with family and good conversations.  I like reaching out to friends on Facebook .   I like reconnecting with old friends, spending time with current  friends and making new friends.  I like traveling, visiting people and going on vacations and all the people we met along the way.

Yet, for me, it is essential that I take time regularly to choose to be around people who “raise me up”.  People whose energy inspires me and motivates me to be more of the person I choose to be, my best self.

Are you an energy vacuum?

I would love to hear your experiences and perspective. Do share so we  may all benefit.

Let’s Get Real

…that you cannot find or create a costume big enough

to hide your true self from anyone.

  In truth, we’re all wearing The Emperor’s New Clothes. We parade before the world naked–thinking that no one can see us. Why not just be proudly revealed, and authentically who we are?

And do not worry about being rejected and alone. It is

the real you that everyone falls in love with–and that

God adores.

So I am once again inspired to write after reading my daily message from Neale Donald Walsch.  I did something new today when I was playing on my BlackBerry in the early morning hours after waking up and not being able to sleep, I started reading others blogs and I found some good ones.

I read some  wonderful articles including, Old Fashioned Play Builds Serious Skills and Changing the Paradigm which reaffirmed my beliefs about home/unschooling.

And I read some others where I disagreed which in turn fueled me more to write my own thoughts. ( I thank all who post their ideas and opinions.  I like reading articles that challenge my way of thinking as well as ones that allow me to get a glimpse of how other people think .)

This post, Part2: I homeschool because I am selfish – Homeschooling Five, was by far my favorite. It was my favorite because she was real. She wrote what she was thinking and what I and others have thought. After reading her bio, I read more posts.  She wrote about “owning our words” and “not censoring those who disagree with you” in another post.  That is the kind of writer I aspire to be…one who speaks my truth clearly yet honestly; respectful of others yet without apologizing for being who I am.

So now, in the words of the amazing song writer and performer,  Billy Jonas (no, not one of the Jonas Brothers), “Let’s Get Real“.  Real about what you ask?

Burnout

Not just burnout in the general sense, but caregiver burnout.  Sure, this is recognized like described in the WebMD,  but I believe we need to recognize and deal with this before it gets to the full burnout stage which is basically Depression.

To dig further, I think one of the biggest reasons we fail to see the signs coming, is as a society, we fail to acknowledge grief.  Sure,  we acknowledge grief when someone dies but grief happens in many forms and it can happen even when the experience is not as dramatic as physical death.   What about other life changes, big and small, that challenge our way of living and cause us to rebuild or rethink our life?  I have many personal examples I can share.

Five years ago, my father was diagnosed with Parkinson’s Disease, very early stage.  He was still living life to the fullest, continued to work in his self chosen semi retired state, living in his dream home on the lake and active with his hobbies of fishing, golf and woodworking. His diagnosis didn’t  directly affect me, yet because I am an Occupational Therapist and have worked with people in the late stages of Parkinson’s, it had a big impact on me.  I imagined the future, based on those who I have seen in late stage, and this changed my image of my future  including my father’s deteriorating health (Parkinson’s is a progressive neurological disease)  and the idea of  no more  family gatherings at my parents’  lake front property, something I had come to really love and value for myself and my kids.  My father had been in good health and was 64 when he was diagnosed. It was a sudden realization of the mortality of my aging parents.  About this same time, my good friend and amazing EFT Master, Jan Luther, was working on  her book, Grief Is…Mourning Sickness.  I had the opportunity to be part of a video tapped session for local television where Jan talked and demonstrated EFT around the topic of grief.  Jan recognized my experience as a form of grief (sure -milder than a more traumatic event, but grief nonetheless).

Elisabeth Kubler-Ross first defined The Five Stages of Grief in her 1969 book, On Death and Dying. Yet, theses stages, now well know, most people associate  with tragedy especially with a terminal illness or catastrophic loss, like the death of a loved one.  There are different degrees of grief.  And so when my 52 year old healthy husband had a sudden unexpected heart attack and cardiac arrest and was rushed to the hospital by ambulance in Ventricular Tachycardia,  his dark blue  face and  motionless body being forever imprinted in my mind, and even after he was “brought back to life” and in recovery in the CCU 4 hours later and I got to talk to him, one could see clearly that I was in a state of grief.  Looking back, I see how I was both in shock and denial.  The denial  came more when I lingered to call 911.  As I research the word shock, I discovered this information on  “trauma cycle” ( see Phase1. The Loss Cycle).

And so while my husband was in the hospital, friends and family swarmed us with love, prayers, thoughts, help in many forms including caring for our three children, providing meals, groceries, and in so many ways I could write an entire blog about it.

Then, 12 days later Don came home and I continued to ask for help, something that used to be difficult for me but had become suddenly very easy to do when Don was in the hospital.  Yet, as time wore on, and my husband improved, it became more difficult for me to ask for help.  He had survived a nearly fatal heart attack and was on the mend and so surely we did not need as much help now.  Yet, I knew better and didn’t foresee fully how I would slow down in asking for help.  Sure, we were excited that he was home and improving and just plain grateful he was alive and grateful for all the help our family and friends gave us, yet, now we had bigger challenges.

When he was in the hospital, life was simple.  I was either at the hospital with Don, helping advocate and care for him, or I was at home tending to the needs of my children.  Now, with Don at home, we were adjusting to his “new life” with 7 medications (when he was on none before), and me acting as his caregiver, taking his BP and monitoring him as an Occupational Therapist (because I am an OT and I can’t just turn that off) as well as the increased responsibility of caring for the children and home with initially very little help from him which has slowly improved but is no where near the level it was before (Don is a a very involved dad) not to mention the added new financial challenges and juggling doctor appointments.

Yea, that was a rather long sentence and it doesn’t even come close to fully describing how much busier my already busy life became.   And with time, it has gotten busier. Sure Don has been able to slowly do more but by slowly I mean SLOWLY!  We talked about it the other day and as of now, June 27, 7 1/2 weeks after his heart attack, he is at about 50% (at most )of his activity level compared to before his heart attack.

And does anyone still recognize that we are still dealing with grief?  I haven’t asked anyone the question.  I know that as a society, one would assume, that we no longer have “grief” but just ” a lot to deal with”.  Yet, all that I have learned from Jan Luther, I know better that this is still part of the process.  Even as Don gets amazing news that his heart has returned from 25% function to 50% function (near full recovery), our life is forever changed and we are continuing to  process this change and are in fact, going through the stages of grief.