Topic : When a Family Member Gets Sick

Quote From: sagouine76

Wow I am so sorry to hear about your sister but am also glad and relieved that they found her tumor. It is scary to know that sometimes simple pain can be anything this serious. Thank you for the heads up!!

 

My heart and prayers to your sister, you and your family.

 

Hugs

Tracy

Quote From: emtmedic

I had a devastating stroke on june 6,2003. It left me on life support for 37 days. It has taken me 3 years to get to where I am now. I am working, driving. I am not able to use my left arm, I was left-handed so I had to learn not only how to walk but to use my right arm as well. At the beginning ny husband was wonderful, but as time has gone on he has become more absorbed in his own life. He has "a friend" at work, but I think he is in love with her. Some of the things he has done for her, he doesn't do for me. Now I have learned that after fighting for 15 years to perserve my kidney function, that I will have to start peritoneal dialysis. This is something I will have to do every night until I get a transplant. This process has the risk of infection ending up in peritonitis. I am told that the wait for a kidney is approx. 5 years. I have been on the list for 1 year already. There is a program that if my husband agrees to give his kidney to someone then I can get one as well. This of course isn't a guarantee that there is another couple who our blood and tissue will match with, but the chances of this happening before a kidney from the list is much greater. My husband refuses to do this. He says there is too much risk to him. The procedure would never happen if he wasn't healthy enough to donate, and he is in perfect health. I know if it was the other way around, I wouldn't hesitate for a second to help make his life better. He has told me in the past that he is only here because of obligation. This has hurt me deeply. I have no other family to rely on so basically because I need him to take care of me, I am trapped. I also have an 18 year old daughter who I love with all my heart, but she is so like her dad that it is frightening. They both act like if they don't talk about this it will go away. Tomorrow morning I am having surgery to have the catheter placed, the surgeon doesn't know if he will be able to even place the catheter because of abdominal surgeries I have had in the past. So I may go through the surgery and wake up with no catheter and then I will have to do hemodialysis. Peritoneal is the best kind to do because with hemo you are sick by the time you dialysis and sick when you get through. I am praying that all goes well tommorrow. I don't know how I will cope with this for 5 years. I never thought that my husband, we have been togethor for 25 years would be like this. People that have known us all this time, don't understand why he would have fought so hard to keep me alive after I had the stroke, I was on life support for 37 days, and now just to do what he has done. I am at a loss to understand.

Quote From: jenrobbins

    I am writing for some advice.  I have been sick for 11 years now and have yet to find a doctor that can correctly diagnose me and make me well.  I have been diagnosed with irritable bowel, acid reflux, GERD, spastic colon, ulcers of the stomach (also the bacterial infection that causes ulcers), endometriosis, psychological problems that cause stomach problems, amoung other things.  I beleive that most of the diagnoses' were given to me just to get me to give up and not go back to see them anymore.    

   

I was first sent to a Childrens hospital up in St Louis when I was 12 that supposedly had the best Gastroenterologist in the US for children.  He did nothing for me, except to try me on I would say some where in the neighborhood of 20 medications.  For some reason I was at one point taking enough medication for a 500lb man and it did not effect me at all.  I then started having a spell where I couldnt stop puking and even the medication they gave me at the hospital did not stop it so I puke for around 12hrs straight.  After this episode I was then told by Dr "The problem is your esophagus, you need a phundoplycation and then you will be fine."   Well I had the surgery and I was still sick; however, I never have puked again so technically it did solve some of my problem.  I kept seeing him until he told me that I was just making it all up and convinced my parents of it.    

   

Then because I had missed so much school that I was forced to have one of the teachers come to my house and tutor me.  After a few months of tutoring I was informed by the new principal that that the old principal had lied to us. I would be forced to either do over the grade or quit.  So then I quit school and got my GED 6 months before my class even graduated.  I ended up getting married to the first guy that I ever really dated because I was basically stuck at home and had no contact with anyone but family members on special occasions.  After that I got a job and started college but i had to immodium just to function.    

   

After several years of being sick and barely being able to stay out of the bathroom long enough to hold a job I decided to try again with a new doctor. I decided to go see an OBGYN  and he was the first doctor to ever really help me.  He listened to me and did a laparoscopy and found that I have Endometriosis.  He started me on a heavy birthcontrol to try to help.  

   

After about a year I had had enough and  ended up going thru a bad divorce from an abusive husband.  About another year I ended up finding a wonderful guy and we decided to get married, but right before we did I decided to try another doctor only to find out I was pregnant about 6 weeks later.     

   

Since then I havent been back to see another doctor.  I need your help I feel like even if I do go to another doctor that all I will get out of it will be thousands and thousands of dollars worth of medical bills.    

   

I dont know what to do I feel bad for my husband and my daughter because I am unable to do everything with them like I should be able to because of being sick all of the time.  I am back to the point that I was when I was about 13 or 14 years old where I was unable to leave the house because even taking immodium didnt help long enough for me to be able to go anywhere.    

I would like to be able to find a doctor that would find out what is wrong with me and fix it.  If its physical or psychological I dont care I just wish somebody would figure it out and at least give me some type of medication to make me a little better.  

   

Please Help!  

Quote From: mohabee96

My Mom, bless her, has been diagnosed with Parkinsons. My Dad is afflicted with altzheimers. Mom and Dad are 79 and 80, respectively. They have lived in the same house for nearly 30 years, and have had a marriage for nearly 60 years. Up to this point, they struggled with the common things couples struggle with, but remained committed to one another. My Mom, the stronger of the two now, has a number of tasks to shoulder, many of which she has no experience with, or is physically unable to complete. They have a woman clean the house twice a week, and a neighbor man comes around to mow the lawn and do handyman tasks.

 

I just came home, to where I live in California, from where Mom and Dad live, in Pennsylvania, after the annual trip I make to visit them Things have changed in the house this time, though. I found myself getting sad that my Dad was unable to drive, let alone ride a lawn tractor, which was once his favorite outdoor activity. He is mostly lucid, and can read a newspaper and talk intelligently about the articles he read. My Mom is unable to fold linens or to cook, though she's able to drive a short distance to see the doctor, or to take herself and my Dad to a neighborhood buffet restaurant, to eat one meal a day.

 

I guess my love for my parents and my compassion are real, but I'm concerned that they will both need a helper, in order to continue living in their house, and maintain health themselves. My Mom is worried and cried many times on my shoulder. She's scared. I found myself sobbing with her, but I kept my composure despite my sadness.

 

I hope that someone on this list can help me understand what Parkinsons is, and what Altzheimer's is--these are two diseases that I'm aware of (my Dad's mother and sister died with Altzheimer's), but need some education about how to deal with two parents and these illnesses.

Quote From: aacindyaa

Hi all I am 28 years old and having a Hysterectomy!! I am so scared! I have Endometriosis and had the beginning stages of Cervical Cancer 2 years ago in which they had to take out a portion of my Cervix. They are going to take 1 ovarie , My Uteris, And my Cervix on the 15th of this month! I am just scared and still can not believe I have to go through all this at my age!! has any one else out there have to go through this at my age???

Quote From: rndmom

     

      

I have an 11 year old daughter and this is our story. Our last school year was horrible! My daughter and I were bullied by teachers, administration, and the superintendent.  

Nicole was always an active child. She was on the swim club and did competitive swimming for 3 years. She is very social, caring, smiling all the time and likes to be on the go. One night in April 2005, Nicole was at a family fun night for the swim club when a child pushed a teen age child off the edge of the pool deck. The boy didn’t see that Nicole was swimming in that area and the child he pushed fell on Nicole’s back. Nicole was in excruciating pain when she got out of the pool. The coaches looked at her back, but didn’t feel that there was any problem. I contacted the pediatrician and was told if the pain didn’t subside by morning, to bring her into his office. We went to the pediatrician and he felt her back was just bruised. Nothing showed on the X-rays. After a few months, Nicole was still complaining about her back, so they had her start physical therapy. Nicole went 2 to 3 times a week, but she was still experiencing pain. The physical therapy was not helping. The end of July, I was told to take her to the orthopedic doctor to see if he could find anything.  The orthopedic doctor had her go for an MRI, but again was told nothing showed on the MRI. He felt the trauma of the injury still just needed to heal more.  

   

  

Nicole tried to take tennis lessons that summer, but would get flushed easily, and her back would hurt so badly when she ran to hit the ball. The lessons were an hour long, but Nicole could only take a half hour practice, if even that long.  

   

  

Nicole was excited about going back to school, she was now going into the 6th grade and it was her first year at the middle school.   

   

  

Nicole’s back never stopped hurting since the accident, and in November things started to change and get worse. Nicole had missed 5 days the 1st nine weeks of school and in the 2nd nine weeks, Nicole started coming home from school so fatigued, feeling sick to her stomach, and would have a severe headache. Nicole would call me to let me know she was home from school, and would tell me that she was exhausted and needed to lie down for a nap. When I would come home from work and try to wake her for dinner, she would be in such a deep sleep. Nicole would either not hear me or would respond that she was too tired to eat dinner. Some nights she would get up 4 or 5 hours later to get something to eat, and then go right back to sleep. Nicole started to sleep 17 hours or more a day! When it was time to get up for school, Nicole would call me and tell me how sick she felt. You could hear in her voice the pain that she was feeling. I would e-mail teacher’s for her school work, trying to keep her current on her work. After a few weeks of this, I had 2 teacher’s start being unprofessional (the best way to put it nicely) with Nicole and I. Nicole’s math teacher would meet with her at lunch time to help her get caught up with her work. While they would meet, the teacher would make comments to Nicole about her inability to come to school and how other children could come to school sick. She told Nicole at least two times that I kept Nicole home for every little sniffle! The science teacher started complaining in his e-mails to me, stating he had no sympathy for Nicole missing school and for not being able to get caught up with her work because it was an ongoing issue. He even broke down the percentage of how much school Nicole had missed. I had explained to the teacher’s previously about Nicole having a history of missing school due to illness. Her allergies would kick up in November and she would end up getting any illness that was going around at the time.  

   

  

I started to keep a journal in December of the events we were experiencing with the teacher’s and administrators. On December 14th, I thought we had made a break through with the teacher’s. Nicole’s math teacher contacted me and we spoke for quite awhile on the nasty e-mails that were flying back and forth. We seemed to finally be on the same wave length of communication, but I was wrong! Nicole was still missing school and sleeping for hours, still complaining of severe headaches and always feeling sick to her stomach. I went and picked up an extra set of books from the school, so that when Nicole missed school, I could just get the assignments via e-mail. Nicole had been off from school and when she went back to school, she had work not completed because we were not given the book. The teacher pulled her out of class and told her how she loses everything and made the comment “Maybe you should clean your house!” Of course, I went to the school the next day because I was the one who picked up the books. I spoke to the Vice Principle regarding Nicole being harassed about missing school and about the missing book issue. We came to an agreement that attendance would no longer be an issue, since I was indeed supplying doctor’s excuses.  

   

  

 We were going to the doctor’s at least twice a week because of what Nicole was experiencing; the constant back pain, headaches, fatigue, and even sore throats. We were told it was a virus for a few weeks, then they thought she had mononucleosis again (she had mono the end of her first grade year). The test came out negative, so more blood work was done. Again, no tests showed anything wrong! We were now being sent to a Diagnostic Referral Specialist, who blamed it on Nicole’s allergies, since her allergies were so bad the day we saw the specialist. I knew that was the not the problem, but was so frustrated I let it go that day. We even tried going to a chiropractor to see if that would help. Again, no success!  

   

  

Nicole had taken an interest in fly fishing and joined the fly fishing club. She was able to attend a few times after school and was really enjoying herself. A trip was planned for February and Nicole wanted to go on the trip desperately. I told Nicole she could go, but the teacher who was in charge was one of the teacher’s that was giving Nicole a difficult time about her attendance. He waited until the last minute and told Nicole she would have to have a parent go with her, and then told her the trip was all booked and she could not go on the trip. She was heartbroken! Nicole was going half days to school to see if that would help, but she still managed to miss school. Her math teacher gave lollipops to everyone on Valentine’s Day except Nicole. Nicole had children eating them in front of her. When I approached the principle, I was told the teacher gave them out in the afternoon. How childish can a teacher be? Don’t they realize children learn from them not only in the classroom, but by their actions also!  

   

  

She started to fall behind in her work. How can you get homework done when you come home so exhausted and sleep until the next morning? I spoke to the head of Secondary Curriculum to see if we could get a tutor to help teach her the work she was missing, and was told she could stay after school for the tutoring they offered at the school, otherwise I would have to pay for a tutor. We finally worked it out that Nicole would go ½ days for 10 days to see if that would help her. Nicole still was in so much pain, that she missed 5 of the half days. I was told that she would have to go back to full days. I wrote the school board a letter, skipping over the Superintendent, since she never tried to get involved in our problem. I called some school board members after distributing the letters. The school board President and Vice President never even returned my telephone calls, 2 others were understanding and were willing to try to help get our issues resolved, one told me he had to hear what the Superintendent had to say, and another told me that this should not even be a school board issue. I did have 5 of the 9 school board members tell the Superintendent that she needed to get involved in our issues. Oh boy, the wrath of the angry Superintendent was now going to start! I had explained in my letter how Nicole’s math teacher had given lollipops to every child except mine on Valentine’s day, and how she was told she could not come back to school for fly fishing club because of her being on half days for school, which was a lie! I was told by the Superintendent and the Principle that they did not agree on what I stated, in other words, they were calling my daughter and I liars!  

   

  

The Superintendent called my home and spoke to Nicole because I was working. I never hid the fact that I worked for the school district as an extra bus driver. Nicole told the Superintendent that I was working and could not be reached, but she still called my cell phone. The telephones on the busses don’t always work, and with me driving different busses, my boss would call me on my personal cell phone. Well, the Superintendent called my cell phone and had me on speaker phone with the Assistant Superintendent. I explained that I was driving school bus, which I say to anyone even if I’m not driving while working. She played dumb and asked if I worked for her school district. I replied “yes” and explained that I was on my way back to the bus garage. We hung up and I contacted her when I got back to the garage. Of course, the Assistant Superintendent was now not available for my call.  She told me that I better never answer my personal cell phone again while I’m working, and told me that she would do nothing for me unless I had my child evaluated. My child is an honor roll student and is not a special education child; she is a special needs child! I told her that I would not allow them to do an evaluation for special education.   

   

  

I had left a note for my boss that I needed to talk to him first thing in the morning regarding the Superintendent. By the time I went to see him, he told me that she already had contacted him. She tried to get me fired! He stated that I was not getting fired because he explained to her how they contact us on our personal cell phones. I was then told that a new policy was going into effect because of me, regarding anyone who got caught talking on their personal cell phones. The policy never did go into effect and no one else was told this information!  

   

  

I had to have my child put on homebound on March 2nd because of the Superintendent not willing to work with us. We were given a stack of work to do and were given a March 9th deadline. The Science teacher told us that Nicole had projects that were late, but his e-mails never stated any due dates. I have a copy of an e-mail from the day after one project was supposed to be due, and he never says anything about it being late. He penalized Nicole for those 2 projects. She would have gotten an A on both projects, but deducted ½ point a day for what he said was late, so she received an F on both projects. Most of the work we handed in by March 9th wasn’t even counted on the grading system! My child worked so hard to get the work done by the due date, and then they didn’t even count the work as grades! How cruel could they be? Nicole wanted to be in school, because she had just started making new friends. The middle school has a Teen Center once a month that Nicole would attend. She would have children come up to her and tell her that she didn’t belong there since she wasn’t coming to school there any longer. The stress of not being able to go to school, friends shying away from her, and seeing what I was being put through by the teachers, administration, and school district made Nicole’s condition worse. One day she had slept from the night before and all day. I tried calling her in the afternoon a few times, but she never heard the telephone. At approximately 4:30, I had tried calling home again, but again she did not answer. My heart sunk and I got so upset, thinking something happened to her. When I got home, she had just awoken from the night before.  

   

  

It took 2 weeks to get a tutor, so I had to teach Nicole her work. She only received 5 hours of tutoring a week!!! The tutor quit after a week; I had praised about her to the Superintendent in an e-mail just 2 hours before she quit! It took another 2 weeks to get a replacement tutor. By the time this tutor started, Nicole had gotten worse and we had to cancel on her most of the time. We had to get the PSSA tests in before we could even start on her school work.  

   

  

In April, spoke out at an open forum at our administration building with Governor Rendell; I told him that the “No Child Left Behind Act” was broken and how the Superintendent would do nothing for me, unless I had my child evaluated. I gave him a packet of information of what we had experienced with the school district; of course, I got a letter that told me that I had to deal with the school level. Three (3) working days after speaking out in front of the Governor, I was unjustly suspended from my position as an extra school bus driver for the school district. I was told that I could not drive until I received a letter of statement saying I was fit to drive. They originally were going to make me pay for that evaluation, and then finally said they would pay. I missed 4 days of work because of this retaliation! I was told because I cried on a few occasions at the bus garage that they were concerned about me. Believe it or not, I passed the evaluation and am now the only employee of our school district that has a letter stating they are fit!! I filed complaints against the school district with the Office Of Civil Rights on my daughter’s behalf and on my behalf. I withdrew the complaints in good faith, since I had a grievance against the school district with the union and finally received the pay due me for missed work.  

   

  

 We were sent to the Rheumatologist in the middle of April and finally received a diagnosis; one year after all of Nicole’s pain started! I felt like a new person just knowing what was wrong with my daughter. Nicole was glad that someone could prove that it wasn’t just in her head! We were referred to the Children’s Institute Of Pittsburgh for Nicole to go through an intense program for 2 to possibly 3 weeks; she will actually stay at the Children’s Institute during that time. She will go through 6 hours a day, 6 days a week of intense physical (3 hours), occupational (2 hours), and swimming (1 hour). She will have to go through the pain to get out of pain! The therapy is individualized and they were only taking 3 children at a time, but started in June taking 4 children at a time. They have a waiting list, and we are looking at a targeted date of July 24 for Nicole to start the program. When we were evaluated, we were shown a tape of a child going through the program. They pull no punches with these children on what they will have to go through to relieve their pain. The child has to decide if they can be strong enough to go through the program or not.  

   

  

I spoke to the Superintendent again and told her about us receiving a diagnosis. I explained to her that I was never out to create problems, I just wanted to help my child get the education she deserved. She told me that we would start with a clean slate.  

   

  

I went to a school board meeting to give the members a packet with information on me filing a complaint with the Office Of Civil Rights, and to inform them that I withdrew the complaint in good faith. I let them know how disappointed I was with the school board turning there backs on me being retaliated against. I included information on Nicole’s condition also to prove to them that my child was telling the truth all this time! I saw the Superintendent that evening before the meeting and she asked how my daughter was doing. I told her how she was doing worse because she was not able to get the exercise she could have gotten just walking class to class and because the lack of socialization. She immediately walked me to another room with the 2 directors of curriculum and told me that we had to get Nicole back to school immediately. She finally was willing to work with me. The next day she had the Director of Secondary Curriculum, a Vice Principle, and the Social Worker come to my home to work out Nicole coming back to school. Nicole could finally go back to school and there were only 9 days left of the school year. How sad that she wouldn’t work with me sooner!  

   

  

My daughter is on the Children’s Health Insurance Program (CHIP), and I received a call the end of May from a woman named Melanie Ericson. She works for the Highmark Caring Foundation as a Care Coordinator and told me about a caring program for children with special health care needs. They help families with the school, doctor’s and social service agencies. That telephone call was a prayer answered! Poor Melanie, I asked her where she was 5 months ago when we started going through this horror. She met Nicole the next to the last day of school. She heard how 2 teacher’s treated Nicole that day, they broke the good faith agreement I made with the school district. Nicole had been out riding her bike when Melanie first came to my home. She saw how exhausted Nicole was and how she couldn’t even get off of the couch after riding her bike for about an hour. Melanie has been a blessing to me. She helped me get a plan in place already for the next school year. She is working on having someone come to the school from the Children’s Institute to educate the school on RND and has given me information on this condition.  

   

  

I feel strongly about the need to advocate for the children experiencing this very real pain. I advocated two years ago for my nephew, who is in the Army, and was diagnosed with Reflex Sympathetic Dystrophy (RSD). It is the same condition but a different name for adults. I contacted government officials and even took it as far as the White House. That step got us the help for him and in touch with the Surgeon General.  

   

  

I am interested in starting a support group in my area, and will eventually find out what resources it would take for me to do this. There are 2 to 4 children out of every 1,000 who experience this condition. THE PAIN IS VERY REAL AND IS NOT IN THEIR HEADS! They have to experience enough stress without the schools adding to the aggravation! The teacher’s need to treat everyone professionally!

   

  

   

  

We went to see the Rheumatologist again two weeks ago. Her condition has gotten worse and now feels pain all through her body. I pray that the program at the Children’s Institute works for her. I feel helpless and depressed that I am not able to help my child. There are some days that she has trouble getting out of bed because the pain is so bad. I want the public to be aware of this condition, so that no other child or parent have to go through what we went through this past year!