The rest of the week's appointment went pretty much without incident, whatever they were. I have no short-term memory and I can't find my calendar right now.
I have decided I need some time away so I cleared a few minor things in my calendar and on Thursday May 31 am heading down to see my brother for a few days. He's completely rebuilding his living/dining/kitchen area, and a little physical labor will do me good. I don't have an actual return date yet, but I am hoping for Monday. And his wife Donna will certainly feed me well. It's always good to be in the arms of family that you love.
Jim's going to have to survive on his own, although we did some pre-cooking yesterday. He's chronologically challenged when it comes to computers, so he won't be able to give updates.
My larger concern is Ennis, who needs insulin twice a day. But I am trying to get him reasonably regulated in a highish range on once a day dosing so Jim can just use prefilled syringes. Better too high than too low. And I see no way to teach Jim to test Ennis's blood glucose level and the make decisions about dosing.
I sure hope the airlines won't give me grief about all the meds I have to pack along.
Monday, May 28, 2007
The rest of the week's appointment went pretty much without incident, whatever they were. I have no short-term memory and I can't find my calendar right now.
Wednesday, May 23, 2007
Jim and I both had a GI DR appt this morning. Jim drove, which was great, because it relieved alot of physical and concentration problems for me.
The GI DR thought Jim was doing great. He took Jim off the lactulose, the ammonia binding laxative that was helping to keep his mind clear. Jim's major complaint was the osteoarthritic pain in his knees. The DR agreed to let Jim's GP prescribe Celebrex, a nonsteroidal anti-inflamatory drug (NSAID). GI DR said 2 to 3 weeks on that, and if that didn't relieve the pain, then a move to a steroid drug, probably low dose prednisone.
GI DR agreed that topical ointments, and Jim has tried 5, do not work, and neither does glucosamine.
GI DR also scheduled Jim for a colonooscopy and upper endoscopy in a couple of weeks. Said he is healthy enough for it, and he wants the UE to check for bleeding in the stomach. After that, Jim goes back in 6 months. We continue to forget to ask for Jims Hep A and B vaccines, and even though I make the appts to include them, that never seems to be on the DR's to do list.
My turn. The GI DR said my last liver CT scan showed another spot and some fatty deposits. He asked why I was continuing to come to him if I would not eliminate my alcohol consumption. I didn't know what to say. It was like he was firing me. He did set me up for a liver MRI in 3 months, but I likely won't go if I haven't gotten my self-destructive behavior under control. I don't want to waste his time, which is what he basically was saying. I know that fatty liver also comes from not eating, which he failed to validate.
He also said he would not give me a colonoscopy or upper endoscopy, which my GP had wanted to check out my chronic diarrhea. He said he would not perform the procedures on someone actively drinking, and that in his opinion, the diarrhea is solely caused by alcohol. Hello? Stress, depression, not eating? I am starting to not like this DR, and even though he was the one who held onto hope for Jim when he was so sick, I'm not sure I want to go back for myself. He suggested maybe I could work with my upcoming psychiatrist and psychoanalyst on my alcohol abuse. (Hello? There's also anorexia and depression; I have a whole list for those folks.) But I can't blame him for feeling frustrated that I am not taking care of myself. There are lots of people frustrated with me.
Including my new PT. She is such a bubbly personality, and I have never seen a therapy clinic with as much personality as this. I think they need a shop cat. Lisa also was suggesting today that she was ready to fire me. She said that if I won't eat, she can't help me with strength training, which she thinks is vital to my balance and hand movements. She said I should get yogurt, cottage cheese, protein drinks and bring them to put in her fridge so that I could have them before or during PT sessions.
After PT, I went to the grocery and got not only what Jim had put on his list, but also some "snacks" for me. I am sure she will be so proud of me. I don't care being fired by a DR, but I don't want Lisa to fire me. She is sincerely trying very hard to help.
Oh, and asshole Dr. Chemo's office. I called today for a refill for magic mouthwash because I have mouth ulcers and everything tastes like cardboard--again. While I was gone, Kernie the gatekeeper, called back and told Jim I had to call back because my message from LAST WEEK was not clear. I hate that woman. She is the one who would not let me talk to Dr. Chemo about needing to see a neurologist to support my SSDI claim.
I am looking forward to the psychiatrist tomorrow. I hope. And to later meeting with his psychotherpist. I need help. And I keep trying. But sometimes it seems like I get shut down more than I get helped.
I do hate to complain about my med professionals, and I do hate to be in the place I am, but that's where I am. I hope for a breakthrough soon. This is NOT who I am.
Tuesday, May 22, 2007
Haven't showered or been out of the house for 3 days.
But the fun starts this morning.
Tuesday: intake with neurologist, PT, grocery shopping. Jim stays home to let the cable guy in.
Wednesday: GI guy for both Jim and me, PT
Thurday: car appt (oil change and ABS isn't working), intake with psychiatrist
I have been jamming so many appts in. Set up one for my initial bone density test, set up 2 in a few weeks for a new psychotherapist/eating disorder specialist. Have to call my opthamologist for my 2-year check up (and I need it).
Here's that misssing post. I wrote it May 16, 2007. It was in my draft box, so it may be a little sloppy.
This has been and will continue to be the week from Hell. Next week promises to be the same all over again.
Yesterday, I took Ennis to the vet for his little poisoning event last Friday. Blood was "clean," so no permanent damage done. Follow-up in 3 months. That little poisoning event costs me $200 I didn't really have to spend.
Today, the new PT for the 3rd time. Did the anodyne (laser light treatment) on both feet and hands, hand massage, finger exercises, used a vibrator on fingers and feet, stand-in-place balance exercises, and 6 minutes on the bicycle. And while I was waiting for her I did some of my arm range of motion exercises.
Know how you legs get wobbly after a long slow run. Well, I ceratinly didn't need more wobbly.
Then off to the thoracic surgeon, but not right away. There was a 2-hour break between appts. Heading over to a shopping center, picked up some cat food, checked out the food choices (got a bowl of soup and bread), and then visited a kitchen store. Bought some of those forms you can use to make perfectly round eggs.
Still got to the cancer center an hour before my appt. Got my CT scan in the X-Ray dept, but couldn't fill out the paperwork. They filled it out for me and I only had to sign it. More paperwork for the surgeon. I hadn't brought an updated list of meds. My brain and fingers did not want to coorperate, so I only put in the minimum.
Surgeon said the CT scan looked good. Only a very small shadow where the "unknown item" had been last summer. But he agreed to sign me up for another CT scan in 6 months. I think it might just be this DR. He is so very easy on the eyes, and has such a positive attitude.
Tomorrow, another long haul to a prosthetic store. Friday, only PT again.
Next week, GI DR for Jim and me, intake with a neurologist, and PT 3x.
Sunday, May 20, 2007
but I guess not.
It's been a kind of, sort of, busy week. Through Wednesday it was appt after appt.
Saw the thoracic surgeon. The scar on my lung is hardly noticeable on CT scan now. Wow, that DR is easy on the eyes, isn't he Betty?? (Betty knows Dr. Panasuk.) A follow-up in 6 months.
The new PT is working out pretty well. I no longer have the trembling in my hands. Freaked me out one morning when I pointed the mouse and I actually could do it.
Still dead fingertips and feet, but they seem less dead than before. Still stumbling around and dropping things. I do so want to get my feeling back.
I did not go for my PT appt on Friday. Just too out of it to go an hour each way.
Jim's condo has another open house today. And for the first time, the open house announcement is in the newspaper, YESHH. Finally the realtor is doing something.
What else? Still not eating. Wednesday I weighed in at 109.5. Down 1.5 lbs from last week. This really sucks; I was 135 on Thanksgiving. Julie sent me info on a local DR who is an eating disorder specialist. I believe I am anorexic, as I have been twice before (without treatment), but this time I want someone to guide me out. I want french toast!!
Next week: PT 3 times, appts with the new neurologist and the GI Guy. Another freakin busy week. Too much driving.
I will put in labels for this later.
Monday, May 14, 2007
Psychotherapist. I don't feel that she is very helpful to me at this stage. And the eye rolling and head nodding really drive me nuts. I was really hoping the psychiatric center would work for me, but as you'll read later, it won't.
Physical therapy. Ouch ouch, and really antsy sitting there in a chair with my feet on an ottoman and wrapped with the laser light treatment pads on my feet for what they said was going to be 20 minutes but felt like 45. The toes on my right foot started cramping. Some hand and foot massage. Then balance exercises. (The PT did not do the laser light treatments on my hands because she said she wanted to call the manufacturer about lymphedema risk.)
I desperately need balance. I fell again last night, stooping to get ssomething from the bottom shelf of the pantry. Down on my butt. Had to call Jim for help getting up, and he put me, and Ennis, straight to bed. UGH, I was in the middle of fixing dinner, and Jim had to go without.
The Rockford Center. They only do inpatient and day treatments. The intake counselor (Bob, no last name on the name tag) suggested day treatments, but it's 6 hours a day, 5 days a week, for up to 6 weeks. There is no way I can do that! Bob couldn't "recommend" a private psychiatrist for me, but he did give me a list of those in the area. He also said I would continue to need to use a psychotherapist for talk counseling. Bob said psychiatrists around here only do medical management.
I was googling for psychiatrists using search terms Delaware, psychistrist, and cancer, and found one not too far from me who in 2004 testified in a hearing about this state's high cancer rate in from of the state senate. He mother was a cancer victim (don't know what kind of cancer). I will give her office a call tomorrow.
If she can't take me, maybe she can suggest other psychiatrists, and maybe even a "talk" counselor, whether a psychotherapist or a social worker, that specializes with cancer patients.
Have to go. The pizza's here. Too exhausted from the day to cook. It takes alot of concentration to drive that far and have that many appts in one day. I should know better.
BTW, Ennis goes to the vet tomorrow, to check his kidney functions after the overdose. I thoroughly cleaned my office today, and could not find any of the missing capsules. So it looks like he scarfed 600mg of Neurontin and a Prevacid. Asshole!!
Psychotherapy at 10.
Physical therapy at 12.
Psychiatric intake interview at 2.
And these are an hour or more away from home. I have to start google mapping to find how to get from one to another.
Take care, all.
Sunday, May 13, 2007
Darned PICA cat.
Friday night, I put my meds on my office desk, left to do something else, and when I got back, Ennis had left his desk spot, and my pills were scattered, some still on the desk, some on the floor, some MIA.
I "replaced" the missing ones and took them.
An hour later, watching TV with Jim, Ennis came down the stairs, stumbling like a drunken sailor.
OMG. I took him to the bedroom, got him food (he wolfed down 1.5 cans FF), and a litter box. Then he went into a deep sleep.
About midnight Deb415 called. Bless her heart, despite her grief at losing Gizzy the night before, SHE called the SPCA poison hotline for me. Twice. They suggested an ER vet (Duh?), but we don't drive at night. That would have been 3 of us dead. So they gave us "normal" heart and respiration rates and temp to watch for.
Jim watched Ennis until 4am while I slept. He would stand Ennis up and shake him every 20 minutes. Then I watched Ennis, although not as attentively as Jim had. About 6am, Ennis stirred (yessshhhh!) and wanted off the bed. I put him down. Tried to hold him in the litterbox. Tried to give him food and water. He laid down on the floor to sleep more.
The missing meds were 2 caps of 300 mg Neurontin and one cap of Prevacid. The SPCA vet and the local ER vet were both concerned about the Neurontin. It is a med I take for my neuropathy. Kris was kind enough to research that it takes way more than 600mg of Neurontin to kill a mouse/rat, so I felt better that an 18 lb cat could come out of this OK. However, there is potential for kidney damage.
Ennis will not be allowed back into my office until I thoroughly vacuum the floor, which I plan to do today.
This is now Sunday am. Ennis is still alive even though he hasn't seen a vet. I spoke with his vet yesterday, and the vet said 200ccs SubQ fluids daily until seeing Ennis on Tuesday. Ennis took the fluids very nicely yesterday. He is eating minimally and continues to be a bit wobbly, but is so much better than he was.
During this adventure, I couldn't get enough blood to test his sugar, so I didn't give him insulin. Finally, at +37, he tested 297 so out came the Levemir as well as the R booster.
Thanks so much to everyone who held my hand during this crisis.
Why won't he take his own meds but he will eat mine?
Friday, May 11, 2007
Saw her this AM.
She's on board with my SSDI claim, and agreed that specialists are more effective than family practitioners. She agreed to make the referral to the neurologist, and agreed I should seek treatment through the Rockford Center to a psychiatrist. She also upped the dosage of my anti-depressant, saying that a few days upped dosage before the mental health assessment might give them something more to deal with.
She said Dr. Chemo, who has never called me back, might not get on board because he has lots of patients with breast cancer who do not fall apart, so maybe he doesn't think my situation is legit. (WTF????) But GP said I had situations (like the failed implant and my sick husband) that many breat cancer survivors do not have to deal with.
I cancelled my new PT for today. I just cannot drive myself an hour away and back. Too much.
If looks could kill, Jim would be dead right now. He gave me grief about "not being sincere about the PT." He didn't offer to drive me.
Edited: Give me a break! After Jim left the house, I went to bed for a 4-hour nap. Big time bummed out about Deb losing Giz. And my calves hurt. I think from the balance tests the new PT did on Wednesday.
Thursday, May 10, 2007
My GYN referred me to a 24-hour assessment and referral service that treats folks for, among other things, acute depression. GYN apparently refers other patients to this place because of post-partum depression. This was the first time he asked to look at my chest, though all these months of surgery, etc. He agreed I would need alot of scar massage on the right side to break up the "grip" the scar has on my chest wall.
I see my GP tomorrow. In an email today, my SSDI lawyer has strongly suggested that I try to get a neurologist to evaluate and maybe treat my neuropathy. So I will press my GP on a referral; Dr. Chemo won't do it. I have an appt with the neurologist, but she won't see me without a referral from another DR.
Lawyer also thinks my GP is kind of useless to the process. The more specialists that sign on, the better.
I told GYN that I hadn't listed him in my group of DRs on the SSDI form, but he did come up in the final remarks session for prescribing mammo and referral to Dr. Cutter. Therefore, he may be called upon to supply records. He said no problem. He would be happy to have his office send the appropriate paperwork.
My GYN is my favorite DR. He is cute and hugs me several times each visit. And always checks for how I am doing "overall." He was very surprised at Jim's recovery from liver failure. I think he and his nurse were expecting me to tell them that Jim had passed. Nope. He's down in the dungeon napping. I wish I could nap, but an occupational therapist is bringing a seat riser for my bathroom toilet this afternoon.
I need to call neighbor Curt again about putting some grab rails in my bathroom. I suspect that the message I left on his machine 2 weeks ago got "lost," what with a wife and 2 teenagers. Curt gave me his cell number because of problems like that.
Wednesday, May 09, 2007
Jim had his GP DR this morning. GP said Jim's blood tests were "stellar." We didn't ask for a copy of the tests; we are suppposed to get them directly from the lab but that hardly ever happens.
Jim really wants prednisone for the arthritis in his knees. GP said no; nothing oral and suggested something topical that it looks like I can only get on-line. So a little Hocks shopping tonight. He will re-ask the GI DR when he sees him in 2 weeks.
SSDI application. We didn't have to wait too long after my appointed time. I was so nervous; I went through 1.5 bottles of water. The intake woman said it was the most complete and organized application that she had seen.
It's a little complicated being self-employed (and not keeping real good time sheets after starting the surgeries), getting her to agree to my statement about the last day I did any "substantial work." But she finally did, and hopefully the state determining agency will also. I have to do no substantial work until September this year to qualify for any retroactive benefits. But then, I probably won't know until after that whether I got approved on the 1st application.
Because I had documented pretty well, it only took about an hour. Gave us time for lunch before my intake for neuropathy therapy.
PT found that I have sensation in my arms, hands, fingers, legs, feet, and toes. The test? Touching me with a hard plastic "pricker." We then did some balance testing. She said I was having balance problems. No shit, Sherlock. I had shown her my arm bruise from falling last week.
She also counseling me on the normal things I get nagged about--taking my pills, eating, lowered alcohol consumption. She said all of those things can affect the neuropathy.
So we are going to try the Anodyne treatment for six sessions (3x/week) and give me hand, feet, and balance exercises. Also some leg strengthening exercises. I start that Friday.
Tomorrow is my every 4 month PAP smear. Joy! But the last once was negative for abnormal cells, so if this one is too, I only have one more 4 month PAP before I can go back to annual.
Friday is my GP. She is seeing me every 4-6 weeks now because of my depression. I have quite the list of things to talk about. The SSDI application, where I listed her as the lead doctor in knowing my symptoms and treatments. Wanting a referral to a neurologist, although I am starting to waiver on this because the PT today said a neurologist would not do much more in the way of testing than she did today and would have nothing in her/his medicine bag that I'm not already on. Wanting a referral to a psychiatrist. My psychotherapist is OK, but it would be nice to have an MD doing the counseling because the s/he also could manage my stress/anxiety/anti-depression meds. My GP seems slightly an amateur in that area.
Then Monday, the psychotherapy resident.
I so want all these appointments to stop. I want to go out and garden.
Tuesday, May 08, 2007
I got up extra early because I had the appt for a CT scan and the thoracic surgeon. They called about 15 minutes before I left (it's a long drive) to tell me it was off because the DR had been called to emergency surgery. So I had to morning to continue working on other stuff, like my SSDI application. I had shot Ennis early and low at +10 because I thought I was going to be out past +12.
Around noon, I realized that I was just flat-ass worn out. I had a 3pm new PT appt somewhere far away that I had no idea where it was. Sure, yes, I google mapped it. I called them to cancel. The lady said she understood; that often happens with their clients. This place specializes in PT for women with breast and GYN cancers.
Tomorrow. Jim's family DR in the AM, SSDI application right after lunch, and now my intake with the new PT late in the afternoon.
Just thinking about this wears me out.
PS. Blogger has "switched" everyone over to the new version. It presents the opportunity to label posts with topics. This is the first one I am going to try this on. I have no clue what this is going to do or how it is going to work. Bear with me.
Monday, May 07, 2007
Didn't do much today, except Jim and I went out for lunch, but Viv came over to help look at my online SSDI application. She used to do SSDI intake. Thank you Viv. She spent over an hour here, and gave me alot of encouragement and insight.
Just so tired. And so hand shakey in the mornings and difficult to walk in the overnight.
I get a lung CT scan and check by the thoracic surgeon tomorrow morning. I start with the new PT tomorrow afternoon, for work on my neuropathy.
So shoot me! I haven't taken my meds tonight because my 7-day med box is empty. Please let me do it tomorrow before I leave, at least my antidepressant and the Tamoxifin.
OK, so maybe I need to get a couple more 7-day med boxes and set up my pills for 2 weeks at a time.
Sunday, May 06, 2007
I wanted to work on my social security disability application, but that site is shut down for maintenance. Hope they don't lose all the info I have put in.
I was able to see the dematologist on Friday. Got a steroid shot and ointment for the eczema. Please please go away.
My gardens are starting to come in beautifully. I saw a bearded iris blooming this AM. The white azalea in front of my porch. I wish I was up to spending more time out there. I have to put in the plants the Londwood ladies brought me.
Click photo to enlarge.
Front row, left to right:
Stefani and Toonces; Ann and Smokey; Francine and Garth; dian and wheezer; Kris and Jane; Kristen and Bobcat; Suncat; Jess and Earl.
2nd row, left to right:
Cindy and Patches; Venita and The Boyz Boy; Sandra and Barney; Peaches (Sheryl); Alice and Tabby; Holly and Belle; Cheri and Patriot.
3rd row: left to right.
Julie and Smokey; Kate and Dozer; Robin and Peri; Heather and Chico; WCF and Meowzi; Hope4Bella (Marlene); Lisa and Merlyn; Donna, Shiloh, and McKaela.
4th row: left to right:
Glen (Robin's husband); Marjorie and Tigger; Holly's friend Donna; Bev and Mitsy (and now with Finley)
Thursday, May 03, 2007
No CPA, lawyer, or DR appts today! only the air conditioner service company. I may not even shower today!!!
So back to the psychotherapist story. I chatted alot about how great the Longwood weekend was, but did get angry/upset two times. Once at my plastic surgeon. I believe I previously wrote (or maybe I didn't) that I got the operating room reports from Dr. Half-Boob and they revealed that I had a infection in the implant capsule on my right side. Angry that he didn't tell me that, or put me on post-surgical antibiotics. (Oops. Reading back through the blog, it seems the DR did tell me the night of the surgery that the fluid he found appeared "somewhat infected." That still doesn't explain the lack of anti-biotics.)
Second at Jim for being in my space. This was not our agreement, and I don't know how to deal with it. I am not a full-time partner. I don't know how to be a full-time partner. I don't want to sell my house. I love my house.
Yesterday we went to see the SSDI lawyer. She thinks I have a good shot at getting benefits. But, OMG, the paperwork I have to put together. This is going to be a full time job until my appointment with them next Wednesday. And the lawyer wants to be informed of every step I take.
I found a local person who used to do intake applications for SSDI, and she offered to help me with reviewing my application in advance.
I was able to beg the dermatologist's office into an "emergency" visit tomorrow. For the eczema.
I am working on getting a referral to a neurologist for an evaluation for SSDI. Dr. Chemo's office continues to refuse, although they are sending medical records. I left a request on my GP's referral line to make the referral and to send pertinent records. I hope they will do that. I will followup on Monday. (My insurance doesn't require the referral; the neurologist's office does.)
The neurologist plans, I believe, to do an EMG. That should result in a "verifiable" record of my neuropathy. However that won't happen until after 2 and a half weeks of the Anodyne treatments, discussed next.
I have set up appointments for two weeks with the new PT. She has a machine called Anodyne, which is supposed to help alot with the pain of neuropathy (which I don't have) and somewhat with lack of sensation (which I do have).
Let's see, what else. Next week is jam packed. I get a chest CT scan and see the thoracic surgeon for a followup to my "lung cancer scare" last fall. PT 3 times, Jim has his GP. I have SSDI. I have a follow-up PAP (I'm on 4 month callback, but you may recall that my last PAP was "clean; first clean one in almost 3 years). And I see my GP. Wowsa; what a week!!
So back to getting my SSDI info in order.
Take care all!!
Tuesday, May 01, 2007
...screw you. He doesn't want to see me next week for my neuropathy because there is nothing more medically that he can do.
They faxed a scrip to a physical/occupational therapist that is 1.5 hours away from me (one way). They say she might be able to rehab the neuropathy. I spoke to my PT, and the bottom line is that this new PT may have a machine for neuropathy that my current PT does not have.
So I will go down there for an evalation. Apparently Dr. Chemo wrote the scrip for 3x/week for 3 weeks.
The nurse said that all Dr. Chemo could do for me was listen to my heart and lungs. He has no way to measure my disability because of the neuropathy. The nurse said any "documentation" of neuropathy is better from a PT/OT. Well, maybe Dr. Chemo could document that I didn't have my 4th Taxol treatment after I told him about the neuropathy because "to continue would put you in a wheelchair."
OK, I'm pissed at him now too.
A few months back, I went to Jim's dermatologist just to have a general checkup. At that point I had a little eczema on my butt. She gave me a scrip for a 2.5% cortsone cream. Well, now this rash is almost everywhere except my face. I scratch it (because it's itchy), and I bleed. Called today for an appt with her, and she has nothing until May 18. I hope she will prescribe the UVB "tanning booth" that Jim used. I also may ask her for a referral to another good dermatologist that is not as heavily booked as she is.
I saw the psychotherapist again yesterday. But I'm getting tired, so I will write about that later.
It was the Longwood Gardens trip. What an absolutely wonderful time was had by all.
A link to one set of pics.
Having 27 wonderful caring women around me (and of course Robin's husband Glen) made me feel alive again. And it makes me think I should get an annual pass and visit monthly just to see the changes in the flower beds. I have seen enough of the fountains. The tulips were gorgeous. I can't do the conservatory for long because I can't walk much and scooters can't get into the building.
I thank everyone who came. As dian said, "I went to Longwood poor and came back the richest person in the world."
The friendships and personal connections made during this past weekend will be .... I don't know what to say!
I got tired, but I also got a huge fix of energy from these people. So many people helped and reminded me to take pills and to eat!!! I love them all.
For all that came, I already have written a personal thank you.
Jim wanted to have a talk this morning. His issue is about my depression and how collapsed I am at the end of a day. He told me that this also upset Alice. Alice, if that is the case, please email or PM me with your comments. Please don't answer here.
We went today to see a tax accountant about me accessing retirement and nonretirement assets for living expenses. Given I have no income, but a mortgage, utilities, and kitties...and food.. He had alot of great ideas about what to go for first, and said he would help in the future anyway he could. This was probono because it's a firm I've consulted with in the past. Again thank you Pam, and thanks to Rob and Al.
Tomorrow I see the SSDI lawyer. She wants a list of my meds and supplements, and my surgery and treatments. That's tonight's chore.