Well, Crapola!

A few weeks ago, I posted about what my pain medication may hide, yesterday I found the truth. Call me slow about some things but I had to do some thinking.

I have RA, fibromyalgia, bad back, etc - all sorts of nice things that cause pain. So I get the good drugs. I have this awesome pain patch that masks 99% of it. It wasn't until I was an idiot a few weeks ago and forgot to change my pain patch I had no idea how much pain.

The thinking process I had to go through was what was all that pain from and why is it important? I know several people that have RA as well, my mother and an old friend. Both of them are on injected biologics for their RA and nothing else. My mother has other issues and has pain meds. My friend does not have pain meds. Her RA is only treated with a biologic.

More thinking. Then I thought, was my treatment of methotrexate and leflunomide supposed to be taking care of all my RA issues and stopping progression? I didn't really know. In recent visits with my rheumatologist she had been concerned why my knuckles were sore (which they shouldn't be because of my treatment) and she had tweaked my treatment a few times.

Finally, on Friday I decided this has gone on long enough. I sent a message to my rheumatologist (who doesn't work on Fridays) and her nurse called me back. She asked me a bunch of questions. I asked her one question - is my treatment supposed to be controlling all my RA so that I don't have significant pain? Her answer was yes. So I knew, my pain meds were hiding much more aggressive RA than previously thought.

Monday, I got a call on when I could come in to see the doctor or one of her PAs as soon as possible. I actually got into see her yesterday. She needs to go to the next level in treatment and talk to my oncologist because of my cancer history. Some biologics have a TNF factor hidden inside (the T stands for Tumor) and she doesn't want to give me a recurrence (which happened to one of her patients a few years back).

But wait:
First, in the interim she wants me to try prednisone again to reduce inflammation. Start really slowly so I do not react again and if I do react I need to call her.
Second, she needs to talk to my oncologist about her thoughts on my medical history and RA treatment.
Third, she isn't going to change anything until my knee is completely healed after my October 5 arthroscopy. So this will be mid to late November before this change happens.

What all this means is now I am no longer in the mild to moderate RA club, but in the moderate to severe RA club. Another club I don't want to belong to.

Taking Charge of My Medical Crap - Again

I try to be in charge of my medical care. I really do. I take notes at appointments and I write little notes to myself in my calendar on things to ask my doctors at each visit. I am not sure if I am weird for doing this or not but I have no brain so I can't remember anything.

In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)

After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.

I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.

But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.

I think I need to take more notes.

Stepping Back to the Big Picture

Sometimes I just need the big picture and skip the details. Yesterday I saw my knee doctor. I asked him to update his notes on my appointment on the big picture state of my knees. I need this information for my SSDI application and I sometimes just need the big picture for myself.

The status is, and I quote, "At some point they will end up being bone on bone and we will need to talk knee replacement. That could be in ten years or two." In the meantime, I can continue to get steroid injections in them and possibly arthroscopic surgery to clean up the right one.

I hate all this medical crap. Sometimes I get too bogged down in the details and the day to day crap that I forget about the big picture. And sometimes, like this one, the big picture isn't too great. The answer I wanted was 'your knees will be miraculously cured in about two months'.

But I really did need the big picture for my disability application. Which is still grinding through the system, awaiting a meeting with a judge.

I digress. I will also need to talk big picture with my other doctors as well. I could use the overview from them as well.

Thoughts on Not Blogging

I get up every day and say to myself 'I am going to blog this morning before I do anything else'. As you can tell this hasn't been happening. Why? Well there are lots of reasons

• I have been distracted by spring time and gardening (finally).
• I have been routinely over doing things which has tired me out (because I was trying to have fun). 
• I have been lazy.
• But the biggest reason is I haven't felt an overwhelming need to blog. My blog was set up to give me a way to express my thoughts on issues relating all my medical crap. I guess I haven't had huge medical crap to deal with right now.

On the plus side is I really have not had horrible medical crap to deal with and have been feeling less stressed about things. Finally spring is here so I can get outside and play in the garden which makes me very happy. But it does make me over do things and then I need to rest. 

My medical crap has receded to the background. I had a month long break from appointments recently and now I am in the middle of another two week break. Not having to go to the (damn) doctor for a week or two is always good for me since I average more than 50 appointments each year (not counting PT - as of now, I have 29 appointments in the first six months of the year).

But I have been doing okay these days. My biggest medical issue is that I have given up on my damn CPAP machine. I can't sleep with anything on my face and that's not going to change anytime soon. But I did hear about a newer option for apnea that might work for me. And it is so low on my priority list that I have given up stressing about it.

So I am enjoying myself for once and not blogging about it. But I should be able to post pictures of my garden as it grows.

I Need to Stop Reading Medical News

I usually like to read the latest medical news. Mostly because I have a lot of medical crap going on. I like to see what is going for advancements and research. I mean maybe some day someone will find the cure for me and all my ailments and I can go back to being a healthy person.

But sometimes the news isn't what I want to hear and isn't very good. Like today.

"Fibromyalgia Worsens Function in RA" This is not what I wanted to hear. Also there is a higher prevalence of fibromyalgia in patients with RA. But there are treatment options for patients with both RA and fibromyalgia.

But still, I don't like the part about worsening function. Crap. Maybe I should read the political news instead.

Sleep Deprived

I have had this 'dumb a$$' CPAP machine for 12 days now. I hate it. I hate the little mask over my nose that squishes it even though I have loosened up the strap as much as I can.

I hate the way the hose from the mask to the machine comes from the back of my head so I can't sleep on my back without the pillow under my shoulders and neck so the hose is off the pillow so it doesn't stick into my head.

I hate the little online app that is like big brother and tracks how long I use it, if the mask is sealing, how many apnea 'incidents' I have each hour and how many times I take it off and on each night. It also has a little scoring system that tracks all this information and makes you feel like a loser because you can't quite sleep right with it on.

Now I need a nap because I didn't get enough sleep last night. Again.

This machine is supposed to make it so I can sleep better, not sleep less.

But I will suffer in silence until Friday when I go to the CPAP clinic to see about a different mask. I asked them if I should bring the mask I really hate with me. They laughed, and said yes.

Rant over. I am just frustrated and tired.

And after 10" of lovely winter whiteness in the form of snow on Thursday, we got another 5" last night, and are due for another 8-16"+ on Monday. Which means I am trapped at home. Again. Grrr.

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Another 'Upside' to Breast Cancer Treatment

Its not enough that breast cancer treatment consists of slashing, poisoning and burning. These leave a physical and emotional toll that can include additional ailments, including new cancers. One of them is nice rare one without much available research and a high mortality rate - angiosarcoma. Please read and enjoy the following:

"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.

Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.

In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy. 

“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”

Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.

“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”

How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:

"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."

That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.

I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.

That proposed new cholesterol drug

No I don't have high cholesterol (one ailment that I do not have) but I have been reading the stories on the new recommended cholesterol drug. On one hand it makes sense that other cholesterol drugs are needed besides statins. Not everyone tolerates them, about 10% don't in fact. And some people have genetically high cholesterol.

Fine, I get it. But this new drug doesn't impress me. Why?

1. Because it is an injection. 
2. Because it is expensive.

I hate injections. My husband does my weekly methotrexate injection. It would be much easier if it was oral. Needles are a pain to deal with. And I hate needles. And disposing of them and getting shots and just icky poo!

Also, cost is a real issue.

"If the new drugs are approved, it is estimated they would cost between $7,000 and $12,000 a year per patient. In comparison, statins cost between $48 a year (for generic forms), up to between $500 and $7,000 a year (for brand-name drugs)."

That's a big increase. I realize that it won't be as cheap as a generic but what about developing an affordable medication? And an oral pill for $48 or one or twice monthly injection for $7000-$12000? Seriously?

However, "if we [balance] the cost of these drugs over society and the cost to our health care system for caring for patients who suffer the consequences of vascular disease," Antman said, "it's possible that the calculus would suggest this could be a cost effective and attractive approach.""

Blah, blah, blah. The cost to society? Sure. I get it but what about the cost to the patient? And why should that be part of the pricing equation? 

In a normal world, not biotech or pharma, pricing is done for a lot of different reasons. Everything from market placement ('if its expensive it must be good' is a real thought process) to basic cost and supply and demand. In the dream world of medication pricing, these basics are evidently thrown out the window. 

Anyway, I think I will consider new medications as news when they are affordably priced. And I need to stop whining about medical costs, I know but the whole issue just pisses me off. And if I whine about them, I can avoid thinking about my own medical crap.