Dear Erin

fatigued · July 7, 2005, 2:09pm

I could not begin to tell you how often I think of you. Every time I log on, you are on my mind and you are always in my prayers. I think you are an absolutely wonderful person and you are so brilliant. Healing Well has so many very special people. You are most definately one of those special people. Not only do you have a heart of gold and as big as the entire state, but you offer brilliant advice and support to so many. I do not know how you do it. Your plate is already way too full. I am happy that you are continuing to study. However, I wonder if right now it may be a good idea to take a break. From what I understand you are already a RN, and you are taking additional courses, graduate studies to obtain your masters degree in nursing.

I wish I could be taking courses right now. However my disability insurance will not allow it. If I am well enough to study, the theory is that I am well enough to work.

I have 2 masters degrees. I did not do them all at once, but rather in stages throughout my life.

After my first husband died, I continued to work full time, hired and fired two lawyers who were representing my case against the company found negligent in the death of my husband, and took university courses like they were going to be gone from the universe if I did not take them right then, as well as being a mother to my young son. Eventually after firing the second lawyer, I memorized the Ontario workplace safety guidelines and laws. I then acted as my own lawyer. When I read over those transcripts, I can not believe that was me talking. The company was eventually found guilty and the Judge charged them with the highest fine a company had ever had to pay up to that point. They were ordered to pay the Ministry of Labour a large fine. I continued to sue the company. However after more than 3 years my grief therapist told me I needed to let it go. It was killing me. Every court hearing I had to relive those events. The fact that he was lifted out of the job site by a crane, when he had a torn aorta, the fact that he was asking for myself and my son for almost 3 hours. They called me, the police, 5 minutes before John died. I was working at a school, and the phone lines were busy. Why they did not interupt or send a cruiser over to the school are part of the what ifs I live with.

John died on May 16th and June 26th I was enrolling in full time university for the summer. Why? I justified it by saying that since we had no life insurance I needed to get additional qualifications to earn more money. So I began to work on a second masters degree. Every summer and throughout the school year I was taking courses and working full time during the school year. I loved being at university. I loved the buildings, the books, the professors, my fellow students, the smell of the building, just about everything. It was a great escape, and my papers kept me busy on those lonely nights.

I finally dropped the court case and settled for workers compensation pension.

I continued taking courses. Eventuallly my health started to fail and I had to drop from taking 3 or 4 courses a year to one.

The sad thing was I had a beautiful young boy at home. Of course I hired the best babysitters. When a child loses a parent, sometimes they really lose two parents. I was so wrapped up in my own sadness and grief that I could not be the best parent that I wanted to be. I justified all of my behaviour. However, the joy in me, was gone. It was gone for a very long time. I went through the actions, but the only real joy I seemed to be able to find was through getting excellent reviews at work and getting good grades on my papers.

As you can probably tell, although it is now many years ago, and I have remarried, I still feel this loss. Our marriage was not perfect, what marriage is, but we were very much in love and he was my safe place to land.

What cost did I pay? I eventually got sicker and sicker and finally had to go through the grieving process. I still am going through it. I lost a lot of time with my son. Now he is grown and suffers from depression. I wonder sometimes if he ever saw me smile or heard me laugh.

Why do I tell you this story again? I tell you because I am worried about you. You too are grieving. Grieving for the things that you once used to be able to do so much easier.

You are such a wonderful person. Perhaps, you need to take a temporary break from your studies.

I am on disability now. When I was working, I loved my job. However physically it became so difficult. I started losing everything, including important legal documents. I would be late for work. I could not sleep, still can not sleep, and sometimes I would just fall asleep for a half hour or an hour and the alarm would go off.

I would go to work so tired. I was still great at my job, but got sloppy on the paperwork and was not great at meeting deadlines. I found it harder and harder to get along with my coworkers and administrators. I still had excellent relationships with the students and parents.

One day I was questioned about why I was working when I was on methotrexate. I cried so hard I could not explain that this was being used to treat my psoriatric arthritis, not cancer. My boss sent me home that day and I never went back. I lost well over $30,000 in salary. Finally I was approved for disability.

However the disability people have made it clear that if I can courses. This kills me. I want so desperately to take updating courses while I have the time.

I wonder if you taking courses will interfere with your chances of getting disability.

My disability is through a private insurance company which pays me 70% of my salary. However we are still trying to get our heads above the water after me being without any salary for so long.

It is great to be getting these funds now. However we had renovated our home to give my son increased privacy, to help him adjust to the fact that I remarried. Thirty percent less salary of a good salary is a lot of money. I was the primary bread winner. My second husband moved here from England and he is a teacher. He has not got his Canadian qualifications yet so he works on a contract, letter of permission, year to year, and he has none of the union benefits. He had taught in Europe. However after his fiance died, he developed severe plaque psorasis and he took a job in banking. They recognized his talent and trained him to become a stock broker. In England he was earning a very good salary. However when he gave it all up and moved here, he was not able to work for two years whilst he waited for a work permit and his landed immigrant status. During those first two years he came to work with me everyday and volunteered at the school. So once he got his work permit, he was hired to take over a maternity leave at my school.

Erin please take care of yourself. It really sounds like you need to be on disability for awhile until you get stronger.

I am worried about your weight loss.

I am worried about how much pain you are in.

I never get a high from my pain meds and never did. However, now that I am home, for the most part I do not need as much as I did when I was trying to work. This is good, not because I was worried about how much I was taking. However when I take less, it is easier on the rest of my body. I am no longer having pounds drop off of me. My stomach is most of the time much better. I am still losing things, forgetting things, having memory problems, sleep problems, and continue to procrastinate on things, am late for important appointments etc.

I did not realize it at the time, but I think for the last couple of years that I was working I was severely depressed. In fact I am almost positive I had a complete nervous breakdown. I see a therapist now, but he is so expensive and not covered by me medical insurance plan. He is a psychologist, specializing in grief and people who suffer from chronic illness. If I was seeing a psychiatrist it would be covered. However I have found that most of the psychiatrists around here only want to medicate you and do not do cognitive behavioural therapy. However, I have come to the conclusion that I can not continue to pay one hundred and eighty dollars an hour, so I will look for another psychiatrist.

Forgive me for this letter being so long. I have been wanting to write to you for so long.

Although I am much older than you, I am 47, I just feel so close to you. My heart reaches out to you.

I am glad to hear that you get some breaks with your special person. I just wish he could marry you and take care of you 24/7.

Do you work full time or part time Erin? I do not know how you do it with all the pain you are in. I do not know where you get the strength to write to so many people.

I pray with all of my heart that you will soon be able to start the Humira, and get better. If I could I would mail you my Humira. It has been sitting on the bottom shelf of my fridge for 3 weeks. It is so expensive here. It cost me $1789.00. Eventually I will get the money back from the insurance company, but it seems like a long wait for reimbursement. I keep putting off my TB test so I can not get it injected yet.

My husband sees a new dermatologist today and I am hoping he will get Amevive. This is a new drug. You get 12 injections and apparently it arrests plaque psorasis. The remisssion is suppose to last for 22 months to two years. BTW he has had this psorasis since he was 14 but it really flared when his fiance died.

I also see the dermatologist today to get some squamous cell cancer spots on my face treated. I hope he will be able to just use the liquid nitrogen stuff. More scars on my face. Oh well that is the cost I have from being a lifeguard when I was younger and slathering on baby oil rather than sunscreen.

Can you take Ensure or Boost to try and get a bit more weight on? How tall are you?

Erin please, please take care of yourself. I will pray for you.

Have you applied for disability yet?

You mention your cats. I love cats too. How many do you have? I always had cats, but my son is allergic so now we have a wonderful standard size poodle. She is not like a small poodle and she is so smart. She is 13 now and has arthritis too. She has her own arthritis medication. It works well. We do not clip her like a poodle. She is just a shaggy dog. She gets shaved down for the summer. She is also trained to work in schools and hospitals. She is so much fun. I would be lost without her.

Well I will end now. I hope I do not get in trouble for such a long post. Please take care. You are in my thoughts and prayers always. Since I have not slept yet tonight I do not know if this even makes any sense.

Take care. remember always how wonderful you are.
Judy

Post Edited (effie) : 7/7/2005 8:51:15 AM (GMT-6)

straydog · July 7, 2005, 9:18pm

Hello Effie & Gang,

I am Susie from the chronic pain & crohns boards. Judy, I just read your post and I wanted to cry. My god, you are such a strong lady. It amazes me the amount of strength we can manage to pull together in a crisis situation.

I have read a lot of Erin's posts and have had her on my mind. Its awful to see someone in the shape she is in to be so young and so much life ahead of her.

I am 52 as of last month, my problems began after an emergency resection 7-4-02 while on vacation in Mexico. Since that time, my health has spiraled downward, not just from cd, but osteo-arthritis, crohns arthritis and PN in my hands. Depression from hell. I am halfway out of the black hole. I had to stop working as of Oct. 03, my gi who has only retired one person in his life, demanded that I stop working and file for SSD. I finally filed Feb of 04 and was awarded benefits w/o any problems. I have worked 20yrs plus as a paralegal, its a very fast paced high stressed job. My load of cases averaged 150. I settled claims, ran the office, did the bookkeeping, you name it. This was my true love, my work. Anytime I had a problem, I could always lose it in my work.

I eventually had myself a meltdown and got on Effexor and I see a psychologist. I have learned so much from her. I still have issues with denial of my health problems, I am still grieving because of not being able to do the things I would normally do. I have always been very independant, self-spoken and went 500 hundred miles per hour a day, now I am at a snails pace. I am very limited, had surgery on both knees last year, now both may need to be replaced.

My worst year was on 8-7-04 when my only brother was in an auto accident, (one car). He was pronounced at the scene, somehow god was not finished with him. He was in a coma for 3 months. He is better now, but w/two bleeds on both sides of the brain, he does have problems. As hard as I tried, for the months he was in the hospital I could not be there every day for him. When I did 5 days in a row, I ended in bed for a week. We are very close, so naturally when he started getting better, so did I.

Last Wed. my pain mgt doctor implanted a morhine pump in me and I feel this may be my new life. I am happy, excited, scared, all in one. Where did that 49 yr old gal go three yrs ago. The changes in some ways have been good, others bad. What a crap shoot.

Judy, it is not unusual for a person to grieve yrs after losing a loved such as you did. I went thru this with my neighbor that lost her husband three yrs ago. She is just now beginning to truly grieve. She had a 16yr old daughter at home and felt she did not have time to grieve, she was too concerned about her daughter and this nearly destroyed her, both physically and mentally.

I want you to know you are one amazing lady. If you can make it thru your grief, which I have no doubt you will, life will get a little easier. I sort of got tones of you feeling guilty about your son and feel perhaps his depression is your doing. Do not go there, at the time you did the best you could with what you had available to work with. You have absolutely no guarantee that your son would not have had problems with depression one way or the other. Not all mothers & wives have the ability or capacity to have done what you did and lady, my hat is off to you. If the world had more of you in it, more children would stand a better chance at life. Lots of hugs your way....Susie