Hello - Recently Diagnosed

Wade

 

It does help to be reminded I'm not alone and that my feelings are normal. I'm trying to be positive, but it's hard when you're stuck at home. My car broke down - we don't know what it's problem is right now. This happened two days after we replaced the starter. We're thinking electrical.

 

The insurance will not pay a dime on my lymphedema sleeves and vest so they are trying to find someone who will help. The sleeves are 80 each and the vest is 1400. They also will not pay for the Lyrica so I've been prescribed something else. I don't recall the name - my husband will pick it up today.

 

I hope life turns itself right side up soon. I just don't know what to do to help it.

 

Christmas is coming, so I'm focussing on it.

 

Becky

 

 

 

 

I've been exercising every day in addition to going to exercise classes three nights a week. I'm job hunting and applied for two so far this week.

 

I had a petscan right after thanksgiving - thankfully no cancer. I guess these groin lumps can turn to cancer at any time so that's why all the ct scans and the petscan. I was having horrible pain in that thigh and hip.

 

I bought my compression sleeves off ebay from Bell-Horn. I knew my measurements and took them again. I bought a medium. They fit so much better than the ones costing $80 a piece. I paid $32 a pair. After one day, my arms felt better. However, a week later they didn't fit. My upper arms seemed have gotten bigger. I ordered large ones.

 

I'm going to be a grandma again in July. We'll find out the sex next month. The heart rate at 8 weeks was 164, this week it's at 140. We thought a girl, but now it could be a boy. lol

 

KariLynn is almost 4 mos. She grabs onto things and pulls herself up into a sitting position then onto her feet. She's growing so fast. She's such a happy baby and very sociable.

 

Well, I should head to bed. I stay up until I fall asleep a few times in the living room. If it wasn't for the pets, I probably wouldn't get out of bed until hubby comes home.

 

Hugs,

Becky

Skylar Alycia is now in my prayers. My grandchildren add so much to my live, too. 

Your story angers me. I have never heard of a life insurance company being able to cancel an insurance policy that has been issued because a person has developed cancer or any disease for that matter. They can certainly deny coverage to you before a policy is issued, and that denial can be based on e.g. a diagnosis of cancer but once the policy is issued, in my opinion, it is issued. You are under no obligation to tell a life insurance company that you have a disease. 

Again, I am not a life insurance expert. Just my experience and my opinion and perhaps I am incorrect; sorry about that, if I am. I am sending you my contact info and maybe we can talk about it if you wish.

You are already getting some help from an attorney on your disability issue, as you should.

Here is another important resource.

good luck to you and I hope you feel better soon and again best wishes for Skylar Alycia.

warmly,

Steve

 

Through it all, I'm trying to keep my head above water. Dr. Agrawal did labs and my liver enzymes were high, so he had the test repeated and it was even higher. He had a sonogram done and I have a fatty liver and gall stones. Three weeks later, I went into the cancer center for bi-annual CT scan and labs. A week later the center emailed me access to a new system where patients can access their medical history and contact their team and so forth much like OSF MyHealth. I went in and set up my account and found out I can't do anything but see the lab results. I was quite perturbed when I saw the numbers on the liver enzymes. They were in the 20's rather than the 60's the tests three and four weeks earlier showed. I pulled up all the labs from OSF dating back to March 2011 and while they were all in the normal range, he set slightly increased. Not a single one was ever under 30. So, I attempted to send a message to my oncologist's office and there is no email available. I go in Thursday. I want copies of my entire records - I have bits and pieces. She did no labs for my March visit yet she stood there and told me my labs were good. I didn't push it at the time, because Dr. Agarwal had done labs in Feb.

 

I'm mad at my psychiatrist and my neurologist & surgeon are mad at me. The meds the neurologist put me on didn't help, only made me sleepy and I was falling asleep behind the wheel so Dr. Agarwal took me off them and lowered the Gabapentin that the neurologist tripled. I don't think I need to be seeing a headache neurologist, but an allergist - he's acting like a baby about it. The surgeon came into the room harping about my weight gain and did a quick check of my chest and contradicted everything her assistant said in March and continued on about my weight. I left in tears and wanted to devour a box of chocolate bars, but I didn't. I walk and exercise and am off the Paxil and on Prozac instead, she wants me on a diet pill and I'm supposed to talk to Dr. Agarwal and have him put me on a pill. I sent him a message about it all and told him I didn't want the pill, but we'll talk about it more when I see him November.

 

Should I be still seeing the surgeon every six months? It will be two years in November and she still has me seeing her/her assistant every six months.

 

I asked my former employer to write up a letter to help me with the disability claim. Haven't heard back. I can't use it against them since the law isn't on my side as far as my job goes. I wouldn't anyway - they were right in not taking me back - I wouldn't have been able to do the job.

 

Due to some issues going on with a couple family members, my psychologist thought I needed to have the Prozac increased and asked me to make the call. I did so and was sent to worst hospital in the area for an evaluation. I was told it would take a couple of hours, but they might want to keep me for a couple of days while they try out a new medication. I said that wasn't happening. She told me I had to have someone drive me, so she spoke with my son who was home. He took me and I was met at the door of the ER by a security guard who demanded to know why I was there. When I told him, he escorted us to the front desk. Next thing I know, I've been admitted and they took my clothes, phone, and ID away from me. I kept asking why and what was going on and all they'd tell me was that it was policy. A doctor came him and asked me what was going on and why I was there. I told him all I did was ask for an increase of medication on the recommendation of my psychologist. He talked to me further and to my son, told the nurse I needed to labs and tests when she came in to draw blood. He went and called my doctor and came back and said I was to go through the evaluation and talk to a social worker. They took us deeper into the hospital and into a room I soon learned could have been locked from the outside. I stood in the doorway, refusing to sit down and wait my turn with the therapist. I kept demanding my clothes and was finally told that I could not have them until I was released and their were three patients ahead of me waiting to see the doctor. I told them they'd better hurry up, because I needed to get home and fix dinner. This idiot told me I wasn't going anywhere unless the doctor said so. I told him flat out that I had the say so, and I was not staying so give me my clothes back. He said no and walked away. Finally, after another hour passed a lady came in, the social worker. We talked and laughed, she talked with my son and she said she'd call my doctor and get my release approved. Three hours later, a nurse came in and was astonished I hadn't been given my clothes. I was to call my psychiatrist and make an appointment to see him and get the med increased - no way in hell was I doing that.  I was livid and would have gone off on him and the nurse, who is a classmate of my sister. This all happened the middle of August and my scheduled appointment with him was set for Oct. 16, I figure maybe I'd be cooled down by then - maybe not. I filed a complaint with the hospital and was told they definitely needed retraining and was told a couple weeks later it had been done -- seriously doubt it.

 

A week after my incident, Skylar was admitted to the ped ward at the same hospital. Horrific! They had no newborn diapers, only premie and size 1 - didn't have her meds or formula available - they were told to bring in what they had at home and they'd try to get it all for her. They tried to get Skylar transferred to OSF and suddenly they appeared with her formula and medications. Now, they refused to wake her to feed her or give her meds which both was required every three hours. I had to go in while the parents had to be at work to make sure got her meds and fed on time. The nurses didn't have the patients or know how to feed her. My first day there, the nurse came in with a bottle and tried to shove it in her mouth while she lay there asleep. Didn't work, of course. She took the blanket off her and she was only in a diaper - they don't put anything else on them. She lifted her head and tried the bottle again, all she did was make Skylar mad. She handed me the bottle and told me to try. I picked her up and coaxed her tongue down to rub the nipple against the roof of her mouth and she took it like she always does for her parents and me. They were consistently late with meds and bottles, told us we don't know how to feed her, on the third day, they sent in a speech therapist who watched me feed her and then showed me better ways. Although Skylar was two months old, she'd only been off tube feedings a couple weeks and was learning the suck, swallow, and breathe technique - they couldn't grasp it. Every feeding is different, what worked the feeding before isn't necessarily what will work the next feeding. She liked how patient I was worth her and how I let her have control. Then she was released that same day and my son came to take her home - the lady returned to speak with him and I was so proud of him. He spoke right up and told the lady she didn't have the right to tell us we weren't feeding her right, and so on. He went through everything we do and told her how she's gained weight since they took her home and since she's been in their hospital, she's lost weight. Two days after we got home her, she saw the pediatrician who encouraged mom to gather all the wrongs from the three of us and write a letter of complaint, giving him a copy. From now on, that hospital is off the list of go-to's. Her insurance said to go this other hospital who will transfer her to OSF. Hopefully, she doesn't need to go. She was in for a UTI because someone dropped the ball. She should have been on a daily low dose of antibiotic - she has fluid around her kidneys. Otherwise, she's doing great. Has fussy times when she's out of her home element, but dad is so good with her. She's a daddy's girl for sure.

 

My plate is so full that some days, I can't stand to be on the computer - it's too crowded and I feel too much pressure to do this or that. I have projects I do where my head just shuts down.

 

I dug two ponds, cleaned out two flower beds, helped move our sheds. My ponds are ready for liners, but I don't want to do it until the fence is up for not only safety measures for the granddaughters, but to keep the dogs out of them. I figure if I have to live with the pain, I might as well do the things I want anyway. I'm also working on some things for Christmas gifts and having a blast making wreaths for silent auctions

 

Thursday, I see the orthopedic doctor, because x-rays show no issues with my hip bone areas. One day, I had to get out of the house so I went to Walmart to just walk and look at things and I pushed myself too hard. My hip started hurting so badly, I could barely walk from the back of the store to the front - and my husband had texted and asked me to pick up a book shelf unit. It was heavy. When I left the parking lot, I saw I'd been there four hours. The thought is a muscle issue. I am up to walking a mile with no pain. I take the Yorkipoo's with me and we go at a fast pace.

 

I then see the oncologist who I must also remember to show her the pockets of fluid around my knees and ankles, they get worse when I walk.

 

Then I see the dentist who is fixing chemo damage to four of my front teeth. Then I get to relax with Skylar in the evening. Her dad starts a new job today - one that will give him more money and more time at home. He has to go out of town for training, which will give me more time with Skylar this week and my daughter-in-law. I'm enjoying getting to know her better. She's also cut her work hours way back, and they are making more of an effort to join in with family functions. It's been awesome. We were able to get a family photo at one my family's reunion.

 

I have a lot of positives in my life, but sometimes I just can't get on board.

All of the incompetency you experienced sounds like it belonged in a scarey SCIFI movie. To have it be life events is terrible. Some how these things make us stroger to dig our heels in just a bit deeper. Said a prayer for your sweet Grandaughter.

I have never heard of an insurance company cancelling like that. It just sounds so dirty to me. People in position always say things are private or cannot be changed on paper my familly has had it done to us. So things can be changed, and there are mean, cruel, lacking compassion beings out there. I really hope this gets straightened out and the insurance company does NOT get away with it.

Natalie