CDC Symptom Diary Card

Wednesday, May 12, 2010

I just need to vent

Wish this post was a happy-go-lucky note.  Before I vent about my arguement with the physical therapist, please allow me to paint a picture of my current status.

1.  My arthritis is flaring.  It takes at least 3 to 4 hours before I can really do anything.  My hands are swollen, hip hurts, wrists hurt, neck hurts.  All I have to do is a little extra activity and whammo.  My next Rheumy appt isn't until October, I'm on the waiting list, but I need to do something.  Taking 5mg of Prednisone and Advil every day.  I'm not on my miracle drug, Enbrel, anymore.  This worries me about my future and also is very frustrating because I need to increase my activity to heal from Cancer.  I need to exercise more to prevent Breast Cancer.  AND I don't want Ovarian cancer to return, so I need to be slim and healthy, as much as possible.

2.  I can't train to go climb a mountain.  I want to really celebrate the recovery from OC and go do something extreme that says " I won!"  My arthritis says I am going to suffer if I enjoy gardening, that's what.  My digestive system is still a mess so I don't want to celebrate by eating, because eating is not fun right now.  (I can really sympathize with mom who is a diabetic)  Whine whine whine, I just need to deal with it I guess, I just want to be stronger and I will need extra time to get back to a good state, if I ever do.

3.  I do get to have iron infusion treatments twice per week for three weeks in June.  That is good.  Maybe removing my anemia will help me cope better and give me more energy to get stronger.  My hematologist said I have Thallasemia, another genetic illness.  When does it end.  He also thinks my neutrapenia is cyclic, so I'll need to do weekly lab draws after the iron therapy so he can track my situation.  That will probably start the end of June and I have no idea how long that will take. 

4.  I will have a mild surgery this Friday to have an abdominal cathetar removed.  Because my immune system was so so low, I was lucky to get a neulasta shot the other day.  Thank God.  That should last for two weeks or so.

5. NOW... I have a huge headache because the Physical Therapist and I had an arguement today that came out of nowhere.  I saw them on April 1st.  They did some myofacial release therapy and gave me some mild exercise instructions.  It lasted about an hour and they said they would get ahold of me so that I could come back in a week or two, depending on how I feel.  I was told that I had 5 visits approved by my insurance.  That's it. 

They finally called me last week to schedule an appointment ( a month later).  I kindly requested she call me on the 10th because I was waiting on my hematology schedule, then I would be better able to schedule the next physical therapy. The scheduler was totally OK with that.

So today the PT scheduler called me to schedule the next appointment. (45 days since I saw them). Because my schedule is now packed with surgery Friday, iron infusions twice a week etc etc, I wanted to wait until June.  I'm overwhelmed with doing too much "treatment" on one day, that's all.

Out of nowhere, the scheduler said she'd need to then discharge me because that was more than 4 weeks between treatments.  I said, "it's ALREADY BEEN more than 4 weeks"...blah blah "that doesn't make sense". I got stressed and I begged for an appointment in two weeks.  The conversation was edgy because I don't want to lose my PT visits over something like the scheduler not calling me in a timely manner. I had no idea that the orders were for me to be seen weekly for 5 weeks.  If I would have known that, then I would have taken initiative and called them, and would have asked them why they didn't call me back after my first visit.

The Physical Therapist called later and said "Sounds like you don't need PT anymore, you must be doing well".  I'm like WHAT??????? I said that I still needed PT, was having abdominal pain still and didn't understand why they wanted to discharge me. I said to her also that it was already over a month before they called me for my second appointment.

She told me I need to be "polite" during our conversation.  She was totally condescending, wanting me to be the "bad guy".

So we went round and round about that PT never called me to reschedule and they said I should have called them......whatever.  My phone kept dying, so she probably thought I hung up on her (to make matters worse).  How did this happen?  I am the patient.  I am not privy to patient scheduling policies and procedures and I don't know the exact medical orders.  Plus, they are contradicting themselves.

Personally, I think they don't want to see me because I got frustrated with the scheduler and have been now labeled as troubling or something.  I think they messed up the doctor's orders and got me entangled in an argument so that they can claim I am cantankerous and uncooperative, so they then can justify discharging me.  I hate this kind of thing.  I hate being labelled this way when I didn't even do anything.  They forgot about me, period.

So the PT said she was discharging me and told me to request a new PT order when I see my Oncologist at the end of June.  WHAT?????

At the end of the conversation I said to her that I do not want to be made out to be the bad guy, I did nothing "wrong".  I had to re-explain that I am worried about OC returning, getting breast cancer, and that I have all these appointments coming up for hematology and that I am on antidepressants.  I AM DOING THE BEST I CAN!  I forgot to tell her about the arthritis.

So I had to leave a message with my oncology nurses that PT has prematurely discharged me and gave them a summary of the situation.

AGAIN, what  And why am I always the bad guy here? 

The worse part is that I bet my insurance won't approve it again, because I went several weeks without therapy.  The PT just screwed me over.

Just needed to vent.

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