Erin and others I have so many unanswered whys?

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effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/11/2005 6:37 PM (GMT -7)   
Dear Erin,
I am hoping and praying that this post will find you feeling a little bit better.

I so worry about you. Why do you have to experience so much pain and poor mobility? Why can the doctors not find a medication that would stabilize your pain level and increase your quality of life? BTW, what is a LPN?

I hear such sadness in your post. I know how hard it is to have to slow down on courses. I just love studying and it is so hard to not be able to do it. I still do a lot of research on my own and read professional texts and journals. However it is not the same as being in class and being able to share your ideas with the professors.

Having taught at the university level myself, one summer, I do know, that at least in Canada, we are required to make modifications for students who may have medical conditions that could interfere with their progress. For example an arthritis sufferer may get to write their papers by dictating them into a computer voice programme.

What ever suggestions are made to the university by the medical professionals, we are required to try and implement the necessary modifications.

University students can be given additional time to complete papers and assignments. Materials that are part of the required reading can be put on to tapes, and preferential seating and parking can be arranged to limit the amount of walking.

I feel your pain. If I was well, I would live at the university. My dream job was always to get my PhD and teach at the university level and write lots of books and do research. I love chatting with all of those academics. Sometimes I do not understand what they are talking about, and other times I feel like a million bucks when I share stories with them that make them think about things.

I have so many unanswered questions dancing around in my head. For example I want to know why schools do not recognize multiple intelligences.
Why high school students have to take early classes, when we know through present day research, that quite often teenage bodies go through a physical change that makes their wake cycle different.

Or why is it that certain students are valued more?

Why are some students made to feel different at a very young age?

Why do we expect all six year old grade one students to all be reading at a level 16 by the end of grade one. If a six month old baby is sitting up and the 11 month baby down the street is walking, we accept that this is due to age difference and development? Yet, when the baby who was born in the last few days of December is compared to the student who was born in early January, we do not take into account? Both students are in grade one, however the January student is eleven months older.

Who reaches out to help the shy child, or the child who is a victim of bullies when sometimes these students are too shy to say anything?

Why is it that all children go out for an extended period of recess activity at lunch time, regardless of whether or not they are dressed appropriately for the frigid temperatures?

The vast majority of teachers who are outside for supervision have very warm clothing and take a short turn on duty. The kid with a broken zipper on their light coat, without a hat or mitts and light boots, gets into big trouble for asking to go into the washroom to warm up?

Why do we not recognize that the world does not need to have all students be university graduates? I remember once a student who had very weak academics, but boy could she clean up the room, and was always the first child ready to help a classmate who was sad? This child gets the standardized report card, printed out on a computer talking about all that they can not do, not what strengths they have.

Why are diabetic children hassled rather than encouraged about checking their sugars?

Why have we not done more research on how high blood sugars effect a student’s learning?

Why are kids with sickle cell anemia or arthritis not given better care, like the right to work in the library, during the really cold weather or if they are not feeling well?

Why do asthma kids and their parents get ostracized when they tell the school that they need to stay inside during the cold spells?

Why are kids and teachers expected to work on the second floor of an unairconditioned school?

Why do some kids get to have access to a computer and the internet whilst others have barely even a book at home?

The list goes on and on. I sure enjoy stirring the pot and asking questions, and debating on how we can make schools safer, with greater equality etc.

Erin, I am so sad about your Humira. I wish so much I could get it for you. It is the same in the health care world, why is their different levels of care depending on income and insurance.

Erin how could your dad be taking vacations when he knows I am sure how sick you are. Why does he not help you out?

Why do we feel embarrassed and ashamed to ask for help? It is not like we are asking for a Lamborghini or a 24 karat diamond ring.

Well these are just some of the whys that wonder around in my head.

I would like to make this world a better place for all children, and you would like to make the world better for your patients.

But those of us that rock the boat and question practices are seen often as being radical trouble makers.

Hang in there Erin. Know that you are respected and loved by so many. You are such a special person with so many gifts.

I pray that you will be in less pain by the time you read this letter. I pray that things will work out for you with the disability application, the university modifications and with the Humira scholarship.

You remain in my thoughts and prayers.
Effie/Judy

p.s. I have a million other letters to write. I see how special all of you at this arthritis site are. You all have so many admirable qualities and are all special. I keep all of you in my prayers. May God bless you all and bring you good health, happiness and laughter.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/13/2005 5:42 PM (GMT -7)   
Judy,
you are a great lady. thank you for this lovely post. i too ask myself the same questions.
oh, an LPN is a liscensed practical nurse. meaning i can do all of the same things an RN can except start IV and give parenteral meds and do leagal charting (and get paid less). hah.
i'm impressed with your acedemic history. so i know you know exactly how i feel about getting a sense of self by at least trying to get through one graduate course this summer.
everything is alright and settled with the arrangements @ the university for me with seating and attendence.
when you were speaking of all of these problems with the schools and children, sadly i feel that a lot of authority people running the systems find it easier to just NOT ADDRESS the issues at all. but i feel that things in the very near future will turn for the better.
doing a tiny bit better than before. still very weak from being in the hospital saturday. getting ready to go to sleep! {{{{{{{{{{{{{{{{{[ hugs }}}}}}}}}}}}}}}}}}}}}}}}
till tomorrow
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/13/2005 5:45 PM (GMT -7)   
also, you got me.....there has been a lot of sadness in my posts. thank god you guys can't see my face! it's just as bad. slowing down is hard (well...wasn't too quick anyway!) but having to let go of working and all really made feeling worse ....well, WORSE! been ripped away from alot the past 3 months. but i think i will visit my old job friday to say hi. i miss it.
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/14/2005 2:40 PM (GMT -7)   
redface  oy, tired.
effie, i wanted to continue a bit more on something you touched upon regarding my father. as you may have read from prior posts...he is a louse. yes, he dropped me from my health coverage. he is a private independent electrician with much $$$$$$. he's also a bad alcoholic. he had left my mom & went off with a girlfriend & other family when i was born. he only came home at 6am each day to change his clothes. good dad huh?
he was never there when i was ill. he was also very abusive. physically & mentally to my mom. @ age 12 he broke my nose by a punch in  the face in a drunk rage. i did not speak with him after that, had him arrested and also mom divorced him. @ 17 i put it behind me & made contact with him again. i know it was the drinking and i know it ruins a person. he was good to me for a few years helping with school,docs, meds....but nothing else. like strictly just $$$ matters. he never asked about how i was and brushed this disease off like it was just a cold or something. the sicker i got the more he distanced himself. up till last year we were ok....this year is hell. no  help anywhere. keeps saying "well, can't the dr just give you something?" i barely had worked enough to pay my copays....he eventually stopped giving that copay money too and no more help with RX. i would be going to the hospital and he would be leaving with his new girlfriend for Aruba.
i am better off just writing him off all together because he is so ignorant and inhuman. when i became disabled he dropped me from his plan. but the week after he left for the Bahamas and rumor has it raked up a $700 liquor bill to top it off.
disgusting isn't it?
i don't know....i would never ever do that to one of my children.
a cruel world isn't it?
i'm glad i did not aquire any of his traits.
take care
erin :-)

Flopsie
Veteran Member


Date Joined Jun 2005
Total Posts : 1361
   Posted 7/14/2005 5:30 PM (GMT -7)   

Sweetheart,

Just remember one thing, IT IS HIS LOSS.

He will not get to enjoy that bubbly personality that all of us here at HW know and love.He will not be the one to comfort you when you are in pain, someone else will be doing that.He will not receive the love and respect from a caring daughter, You have to earn that and it sounds to me like he has not earned a penny's worth. nono

I am so glad that you found a caring person(your honey) yeah that will be there to hold and comfort you. He is the one that will get to enjoy all of Erin's wonderful traits. I know you can not forget about your father, mad and I know the things he has done hurt you, but just remember, he is not in your life for a reason, and you may never have that revealed to you, rejoice in what and who you have now.

 

((((((erin))))))

 

flopsie


Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
 

effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/14/2005 6:02 PM (GMT -7)   
Oh erin, I am so saddened and sorry to hear this. However, I am really honoured that you trusted me enough to share your story. A problem shared is a problem cut in half so they say. Well if I win the lottery, you will be one of my first contacts to share with.

I totally agree with everything Flopsie said, so I will not repeat it. I just say hurray for Flopsie, she expessed it so well. I also want to add that you are a wonderful person. You ask for so little in life. You are bubbly and you lift everyone's spirits. You have lifted mine so often. You "get me", and accept me with all my fears and faults. That means so much. Words will never express the gratitude I feel.

And BTW congratulations are in order. Congrats on becoming a forum moderator. I hope Oreo is still with us too. But great big congrats to you. You are a natural for this position!!!!!

Anyway you have also touched on an area that I am very sensitive about.

I have actually considered bring this up with my local member of parliment. I have seen it so often.

It is part of my "why? oh why?"

I have seen far too many parents who decide that once their children reach 18 or 21 their obligations are over.

For many parents, this is reasonable. If their child is no longer at school, is healthy and just chooses to live off mom and dad whilst they lay around all day and stay up to all hours on the computer or watching television, then perhaps some reality therapy is called for.

I have seen some young adults who are legitametely suffering, and their parents cut them off at 18 or 21.

One of our neighbours had 3 children. Their youngest son hung himself when he was 14. They had taken him to the hospital but the hospital insisted nothing was wrong. The father of this family had seen his own brother take his life at an early age. He knew something was wrong with his son. The eldest of the family was born with cognitive difficulties and had very inappropriate and immature social skills. She managed to barely pass high school with a lot of accomodations. The middle child, a son, seemed to be relatively stable.

After the father had taken the youngest son back and forth to the hospital all weekend, he was not able to convince the psychiatric team that anything was wrong. They just said to not leave him alone and keep an eye on him. Both parents worked shift work. There was going to be a small time block from about 9 in the morning until noon when neither parent could be there. They insisted that the eldest daughter stay with him. She did. He did not go to school that morning.

After watching him for about two hours, the eldest daughter felt that all the abusive language that since her younger brother was dishing out to her, he was scting like his typical teenage self and that he was okay. So she went into her room and called a friend. When she got off the phone she noticed that the door from the house that led to the garage was open. She looked all over for her younger brother and could not find him. Then she looked in the garage and saw he had hung himself. She called 911, and they came. he was in a coma for a week.

Needless to say this caused unbelievable stress in the family and about three years later the parents divorced. The father bought a townhouse with 3 bedrooms, one for himself and two for the kids. His wife bought a very high class one bedroom condominium and took all of the brand new furniture.

The father suffers from horrible arthritis. Yet he goes to work everyday and provides for the two kids. The eldest daughter is now around 26, but she can only get a job working part time in a discount store. This store is known for hiring slightly cognitively delayed persons. She has worked there since she graduated high school. She does get extra hours at Xmas etc. However she never makes enough money to support herself. The middle boy starts university, then quits, works, quits goes back to school, suffers major bouts of depression, so he too is not able to support himself.

The mother has disowned her children. She lives a very good life financially. She has an excellent pension, lives in a beautiful new home etc. She never has to spend a cent on the kids. She does not drive so she calls the husband to drive her grocery shopping weekly. He can barely put food on the table for the kids and himself but he does not have the heart to tell her to take a taxi shopping.

Meanwhile the father is nearly bankrupt trying to keep his head above the water.

So. my question is why is a parent allowed to just drop their obligations to their children because of their age.

If the parents had had the oldest daughter declared dependent before the divorce perhaps this would not be the case. However I think the father felt both kids would do better in time and with family therapy. The therapy has not helped, and they are just such a financial drain, and the mom refuses to help, but she goes on nice vacations and she does not have any health problems.

The same with my son. My whole family is so angry that he dropped out of university, that they no longer speak to him. Even our old family doc, who was also my personal friend, felt I should use reality therapy and kick him out. My second husband's family also think he should get the boot because when they visit from England he does not have long conversations with them. He will say good morning and speak the basic politeness, but does not engage ccnversations to these people who are really strangers to him.

I just can not do that. I know he is ill. I know he should do more around the house, but I can not kick him out. I know part of his behaviour is a cover for his fear that since I got sick so suddenly that I might die like his father, grandfather, aunt etc.

I can not write about all of the case studies here. However one of my previous partners at work and I are considering documenting some cases and bringing them to the government.

Another case i can think of quickly is a young girl who graduated with her masters and then got the severest form of ms. But she is well over 25, so her parents owe her nothing and she scrapes by on the disability payments from the government. I know her parents live in a beautiful home and go on regular vacations, drive brand new cars, have a cottage that is paid for and their house is mortgage free. Her parents are recently retired. By the way her mother was a doctor. Who pays for the disability from the government? The taxpayers????? What happened to family obligations. Why do they sometimes stop at 18 or 21.


Why?

The reason I hear about some of these cases is because when myself and both of my previous partners worked at schools, counselling kids, we would often get close with the students and their parents. So sometimes they come back and talk to us, or sometimes the parents will drop by and fill us in on what one of the parents is doing.

Please forgive my ranting. But the case in point is your dad has treated you so poorly and now he has a chance to help you out and he cuts off your health insurance!!!!!!

I am fuming!!!!!!
I would love to have a chat with him but know I can not and please do not worry I would never do that unless you asked me to.

I notice that a lot of the people on HW, who are dealing with so much in their lives, are still there 100% for their children and grandchildren, despite their own physical and emotional pain.
Judy/effie

Post Edited (effie) : 7/14/2005 7:43:18 PM (GMT-6)


effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/14/2005 6:33 PM (GMT -7)   
One more quick question, you mentioned in your post that you could not give parenteral meds. What are parenteral meds?
curious judy

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/15/2005 6:52 AM (GMT -7)   
morning Judy! parenteral meds are all meds giving directly into the system like IV, IM, SC and through NG tubes.....some i can give but no IVs. as an RN i can do IV therapy. one has to proceed with caution with those....i like that!
thanks Flopsie....you're right, my joey (honey) just eats me up. he's my best friend & share all my good experiences with him. so yea, my MIA father will miss out on all the good things...his loss. my mom is there for me too so that's good. i am so so so blessed to have a mature, respectful, romantic, love relationship with him. he is the best i ever had....and i thought i had it good in the past! after 3 years we're still going strong. cannot wait to live with him permanantly. now it's just 4 out of 7 days a week because i own a home in another city and my mom lives there. but as soon as things settle down with me....i'll make my move!
Judy, you can't imagine what a louse my father is. BAD ALCOHOLIC. out of my life since i was 11 yo. he had broke my nose & a black eye from a drunken punch in the face, & then that was the end of him. when i was 18 he started to feel guilty & want to help me out , & he was great for a few years with docs and $$ and Rx's. but this year is non existant. the sicker i got the less he wanted to help. disgusting isn't it? but i realize that there are people like this in the world. he will get his punishment, so i'm not worried. i also know that alcohol ruins a person & that had a lot to do with it.
thanks for listening ladies! have a happy day...i will too....going to my dr app @ 1245pm. talk to you later!
{{{{{{{{{{{{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}}}}}}}}}}}
erin

effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/15/2005 8:09 AM (GMT -7)   
Dear Erin,
I was very fortunate with my parents. My mom was wonderful. Unfortunately she took sick on my 16th birthday and died of congestive heart failure when I was 18. My dad had not been that close until my mom got sick. When I was 17 my sis who was 4 years older than me got married. Mom was in a remission then so she was able to participate fully in wedding plans etc. She was in remission for quite awhile. I thought she was better and ended up doing a stupid teen thing. I lied to her, and my dad because I wanted to go out and they wanted me to stay in. They found out I had lied.

When I came home I saw 3 fire trucks, the police and an ambulance. My mom was unconscious. I tried to tell her I was sorry but she could not respond. She had a stroke and went into a coma for quite awhile. finally after 2 months she was allowed to come back home. My sisters all blamed me for her setback. Things were different between my mom and I, she had sustained brain damage from the stroke. Finally, I wrote her a poem. She read the poem and started to cry. She said, "Judy I thought I lost you, and now I know I never did."

We held each other and cried and laughed. She was really funny. Then I went to the grocery store and made her favourite lunch. That night she told my dad and I to go and wallpaper the rec room and she would watch. I noticed her getting into respiratory difficulties. My Dad insisted that if we just gave her the new miracle drug, the hospital gave us, she would be fine. I finally got him to agree to administring the oxygen we had at home. However he insisted she did not need an ambulance. He was in denial. I finally had to sneak and call the ambulance. We got her to the hospital. They kicked us out around midnight and said she was stabilized and there was nothing more we could do for her that night. Two hours after we got home, my dad and I got the phone call that she had died. That was the first time I ever heard my dad swear.

However, my sisters have never really forgiven me.

A couple of days after she died I found a poem in her purse. She had written it out on an index poem, I forget the author, but even though it is many years later I still clearly remember the card, her handwriting and most of the words. It went something like:

the penalty of love,
is the fear of losing it.
and when the stream which overflowed the soul
had passed away
a consciousness remains
deposited on the silent shore
of memory images and precious thoughts
that can not be destroyed and will never DIE.

On another note and more recently:

My best friend was also my family doc. We took vacations together. Hung out. I was always on call when her hubby was out of town, to go and stay with her kids, if the hospital called her in the middle of the night. We went to movies together and dinners together with our spouces once I remarried.

However once my health deteriorated she told me I had to choose between her friendship and her being my doc. By this time she had been both for 15 years at least.

I left it and did not respond. I did not know what had happened. Five weeks later I asked her during an office visit if she was making this proposal because she had put me on heavy duty pain meds. She said no. She just told me to choose because none of her other patients called her at home.

I always tried to keep the home phone calls to stuff regarding our friendship and nothing else. Mind you there was the odd time when I felt so bad, she could hear that I was not well if she had called just to chat. So I would have to let her know I was sick. I must admit she treated me like a queen, but I did the same for her.

I finally out of anger said I wanted neither. Two days later I got a registered letter saying I was no longer one of her patients and she sent a list of docs she would recommend.

I tried apologizing, but she would not accept the apology.
I feel that the loss of her as a friend, and it was like I was experiencing another death and I grieved for what we had.

It is so different now to not have a doc, that I felt so comfy with.

A year after this she moved about an hour away. And then six months later she moved 3000 miles away. I called to say good bye. I left a message with her ADD son and I will never know if she got it. We never had a chance for closure.

I hate that. I still miss her and wish we could have just had a heart to heart about what really happened.

Anyway, people have told me it is her loss. But I do not believe this. I felt so honored to have a best friend who was a doctor. We had some real fun on our vacations and I could write a book about all the fun times we had.

Well Erin, your spirits sound better. I am so glad to hear this.

What is your honeys name? How far away from you does he live? What does he do for a living? I know he has good taste in music.

You mentioned that your mom has to take zanax. How does she do besides the anxiety? How old is she? Does she have any other illness? No wonder she suffers with anxiety after what your dad did. Did she ever date or remarry? How is her health otherwise? How often do you see her? Do you mostly just talk to her on the phone? I can not remember if you said whether or not you had any sibblings? If so if they are older, can they help you out with money for drugs etc?

Have you heard back from Humira yet. The company that supplies my Humira is called "Progress" and they are really nice.
Thank you for all the help you, and others have given me, with my fears over this. With a little help from my friends, I will get through this.

Take care. good luck at your doc appt.

Great to wake up to an email from Erin. Thank you.

Hope you have a good day with less pain.
sincerely,
Judy/effie

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/15/2005 12:41 PM (GMT -7)   
:-)  hi Judy
just got back from my rheummy appt. a little progress. i'll post it in a different post.
oh my, what trials you had with all of those happenings with your mom. but she was right...she never lost you! and you'll never lose each other no matter through life or death.
my love?...Joe is his name! such a simple name but what a great soul....very complex and caring. i met him when i had to have epilepsy testings done. i fell in love with him @ hello & a handshake.  REALLY!!!! i had to see him 3 days in a row for neuro tests and it was like 3 dates. on the last day it was sad sad SO HE ASKED ME OUT! yeah AND THE REST IS HISTORY! he runs all of the EEG's and brain studies, he owns horses and likes racing, distant running, marathons, Superman, hot wings, my potato salad!, and the sun! he is up near the Ramapo mountains in north west NJ. i own a home right across the street from the Statue of Liberty! so he gets me on friday nite and he brings me home monday, since he works in my town on mondays. WE LOVE MUSIC....RECORDS, CONCERTS..... sometimes all we do on a saturday nite is cook, drink, and play records. and i get em to dance with me! he looks like Dustin Hoffman in the "Graduate". he's Italian, dark hair & eyes, tan, 5"7 and has a great tushy! tongue
my mom....she's got some social phobias. panic. i think she would benefit from Paxil rather than Zanax. she's high BP and high blood sugar. nothing major. but she's stressed. she is 60 and hasn't worked since 22 so she's broke...gets alimoney which isn't much. but she's a good egg! :-) she has soooo much to offer but is weird with going out and meeting men/people....anyone.
whew! hands hurt! i will write again later.....sorry my friend, erin's a wee bit tired from the day!
:-)   :-) :-) tongue tongue tongue :-) :-) :-) cool erin

Post Edited (erin kachmar) : 7/15/2005 1:44:44 PM (GMT-6)

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