The Happiness Litmus

Almost 30 (well, not until August) and I find it hard to believe that these things still bother me.

I’m not one for coyness, nor am I one to diminish ones show of emotions to spare another’s. I am not blunt, nor am I too soft-spoken. I am merely honest, and never with the intent to hurt another.

I have realized, however awkwardly, that as I navigate through life, I am going to meet people that do not like me. I have also realized that on occasion, there will be a great many who count themselves one of that population. It seems to come with the “advocating for change” territory. It doesn’t seem that many people desire to be faced with “solutions” when said solution requires any substantial change in anything that the general population has grown accustomed to.

I do not do what I do to garner further public approval as a public seat is not necessarily on my itinerary. I pursue change, particularly in disability rights and health care rights, because I believe that change can happen. I also believe that people, when properly educated, will make the right decision about disability and health care rights. My challenge is getting the education regarding these topics to the people. My greater challenge is getting someone (anyone) to care enough to listen.

My final challenge is dealing with those people already in my life (although, perhaps not by any choice of my own) that question what I do, my values, and dislike me because of them. I would like to believe it is because they are uneducated. I would love to educate them, but unfortunately certain venues are inappropriate for what can be viewed as “partisan” education.

What is my solution? In my round-about discussion here concerning relationships with others (not necessarily those close to me) and my dissatisfaction at their present status, I have stated no solution, and I fear there is none. There will always be those who dislike me, and there will always be those who think I am wrong. The true test of my character is what I do in the face of that dislike, and how I deal with those who disagree with me. But this is not a character test, no, but a happiness litmus.

I’ve found, minus a solution, a certain comfort in my own understanding of myself. I have also found a certain comfort in Bob’s perception of me (and his love of me.) I value the people I hold dear, who despite my thundering soap box moments and my riveting speeches demanding change, reciprocate my feelings and value me as I value them. Joy, I guess I have found, is not found in those who find reason to dislike me, but more often in those who love me most. So, as my solution, I burrow my nose in Bob’s neck, and nuzzle a Sandis and Gracie, all the while talking on the phone to my mom and sister. For although I have those who would throw rocks, there are many who hold me dear.

Monday Letter to the Editor

I love writing these things.

I tend to get a lot of comments from people who believe leaving 49 million uninsured and without any health care at all is appropriate, AND makes us one of the best health care countries globally.

Not quite sure I agree with that.

Health Care/Coverage Costs

I recently promised to keep my readers updated on the specific costs of health coverage and health care for my family. My main way of doing this is to include in the side bar of my blog a running total of my expenses.

Please notice on the right hand side my tallies thus far this year. At this rate I will spend around $6,271.02 on health care this year. Amazingly enough, this is around what I budgeted for (exactly $6367.84). At this rate, I will spend approximately 20% of my income on health care, where currently I am spending approximately 24.6%, and last year I spent around 26% of my income on health care.

One very important factor to keep in mind when viewing my families' particular situation in regards to costs of health care is that both Sandis and Gracie currently have Medicaid. This means that the ONLY person in my family who incurs actual out-of-pocket costs is myself. To simplify even further, my family is spending 24.6% of its income on MY health care. One person.

Is this equitable, accessible, appropriate, affordable health care and coverage? Or is this something more sinister?

You be the judge.

Also, I'd really love to hear from other families with chronic illnesses as to what percentages of THEIR income is spent on healthcare. Call me curious.

On Chronic Pain

I haven’t talked a whole lot about this because when I choose to moan and groan I prefer it be in regards to grander issues that perhaps citizens as a whole can help to deter through “people power.”

I’ve been in constant, yet varying amounts of pain since my back surgery in September. I have had week(s) where I felt my pain was improving followed closely by weeks where my pain became yet again a personal adversary. I’ve seen my pain medication dosages titrate up, titrate down, then back up again. And on occasion, I’ve felt desperate and helpless enough to cry.

Yesterday was a big day for me. Two weeks ago I decided that I needed to transfer the care of my medication management for pain to my primary physician (rather than my surgeon.) I also decided to call a local interventional pain management clinic (which helped me years ago with a neck injury) and seek care there as well. I saw both yesterday. I saw my primary physician first. He changed my medication regimen slightly, hoping to help me better control my pain. We discontinued alleve and ultracet and began ultram, supplementing with Tylenol as needed. Later that day I saw my pain management physician who began with recommending another MRI to help determine what type of pain I am having (bone, disc, or muscular.) When this is determined he can help to recommend different types interventional therapies to treat my pain. Lastly I scheduled an appointment with the doctor I began with before surgery from the Physicians Neck & Back Clinic. This clinic specializes in especially intensive physical therapy (pain is a part of their game.)

My pain frustration is high, and some days I believe that this pain is forever. When I feel like this I also want to cry. Because of my history of addiction to narcotic analgesics, I am being very careful. I am avoiding narcotic pain medications at some personal expense, which is increased pain. I can’t constantly be on narcotics, regardless of my pain level. The tramadol is a good solution to my pain without the nasty side effects, but even that can make me tired and can decrease my ability to focus. There is no even ground with chronic pain.

Oftentimes I find myself wondering, would I take my surgery back to have less pain and need a cane? Or would I rather be walking care-free but unable to sit or stand comfortably because of my pain?

There is no answer. No answer at all.

Support the Minnesota Health Act!

The Minnesota Health Act (single-payer universal health care bill) needs you
at its Senate Health Committee hearing

Monday, February 18 (Presidents Day), 12:30,

State Capitol, Senate Health Committee, Room 15, below the rotunda.

We need to pack the hearing room to outnumber the 25 or more health industry
lobbyists who will be there in full force to oppose our bill.

We will wear labels saying "Minnesota Health Plan, YES We Can" to show our
greater number to Committee members and media.

Don't miss this momentous step toward single-payer universal care in our
state. Tell your friends.

Minnesota Universal Health Care Coalition, 651-646-0900

Housing Coalition, Volume 3

I’m sure you recall (if you read my blog anywhere approaching religiously) the problems I’ve had in the past with my property management company: The Housing Coalition.

I’m sure you are also aware that Bob and I are changing the composition of our relationship in the coming months. We have changed a few things about the order of events in the past few weeks. Namely, Bob is moving in a little earlier, we are getting married much earlier than November 1st, and we are having a celebratory party on August 2nd of this year instead of a big shindig on November 1st. As a result of all this change in initial plans, we’ve been on the phone with the Housing Coalition working out getting Bob onto my lease.

Things never seem to go as planned when the Housing Coalition has any involvement. We did have a misunderstanding, but fortunately this time around we were able to come up with a plan that is moderately accommodating for Bob and I but is still within their regular policy.

This morning I received a phone message from the interim director of the Housing Coalition. He first apologized for the misunderstanding, but then he surprised me. He went on to thank me for my most recent letter to the editor.

He’s not the first to mention this, as my pharmacist got a word in to me about it the day after the letter was published. I’d have to say, though, that this is not a race! It is good to know, 7 days later, my letter is still on the minds of the public.

I think he just about made my day!

Associate Chair & CGM

Bylaw The precinct caucus may elect associate chairs to assist and aid in the organization of the precinct for the party in accordance with the Constitution and Bylaws. These associate chairs should be listed in the caucus report to higher levels of the party and may be the alternate for the precinct chair on the county unit central committee.

So that is what I do for my precinct, which most specifically is SD15A W4 P1. I still haven’t done anything for the DFL, other than sending an email to my Precinct Chair. I’m still somewhat impatiently waiting to see what comes of this opportunity, which I thrust myself unwittingly into.

Yesterday, all by 12pm, I consumed 1,165 calories. The majority of these calories were regular Pepsi. Can you guess why? Ahhhh, yess. The unresponsive low. That was yesterday morning. I had a hard time staying within my daily calorie allowance (1541) seeing as how I was over 2/3 there before I even had lunch. The result? 500 calories over. Such is life. I am destined to be fat forever (I know I’m not fat, I’m actually around 152 lbs, which is 22lbs lighter than I was in January of 2007, but still, I’m a woman, give me a break.)

I’ve been wearing my handy dandy minilink for over 3 weeks now. I figure I may as well as report on it, and its greatness. This thing is fabulous, if only because I can finally sleep at night without fear. I was actually able to reduce my night time basals by .65 in the first two weeks. Why is this? Because what is not apparent in random night time finger pokes is immediately apparent on the minilink, which registers blood sugars every 5 minutes. Now, keep in mind, the blood sugars are typically 20 minutes behind what is actually happening, but….and this is a transformative but, what shows on my pump is a true illustration of what is happening with my blood sugars. I was able to see, in the first two weeks, the massive dive my blood sugars were taking from 12am – 5am and as a result, I was able to adjust my basals. No more basal testing!

As a result of this basal change, at first I ran high in the mornings after. Why? I was so accustomed to not bolussing for carbs after 9pm, that I continued this practice. I figured it out fairly quickly. Now I see a nice flat line at night. I still run between 140 – 180 as I’m not yet comfortable running lower (huge fear of nighttime lows is still rearing its beastly head) but I intend to inch myself closer to a healthier bottom line at night.

I mentioned earlier that this thing runs around 20 minutes behind what my body is actually doing. So how does this help alert me of lows? Obviously, my cgm does not keep up with rapid glucose changes, but (and yes this is another transformative but) I’ve noted that if I’m trending down and my blood sugar on the pump says 100, I’m probably closer to 60. I’ve also set my low limit at 95, and typically when that low alarm goes off, I DO need a snack.

As for the sensors, I’ve heard mention that some folk are able to make these things last for 2 weeks. I’ve tried, but I just can’t get past six days. It isn’t that the sensor quits working, though; it is that I have extremely sensitive skin and at six days I’m ready to rip the sensor out because of the itching. I have also had problems with tape, but I’ve had success with two different alternatives to secure the minilink to my skin: Tegaderm (uber expensive) and bandaids (not uber expensive.) The look I want (Tegaderm looks prettier) and how much tape I have left dictates my choice in this regard.

So has the minilink CGM investment been worth it? ( I do have insurance coverage, but I pay 20% after a $1, 125 deductible.) Absofreakinglutely. This thing has changed my life. The minilink CGM has changed how I manage my diabetes, and honestly, it has given me back a quality of life that I had lost for years after becoming less and less cognizant of low blood sugars. I no longer live in fear. I test an average of 6 – 7 times per day instead of 15+. I no longer remember which finger I am “on” and I believe I’ve poked my right pinky for every blood sugar test for the past two days. This isn’t as big of a deal when I’ve cut my blood sugar tests by more than 50%.

And my blood sugars? I think they are doing better, and primarily I would say because of the basal changes to nighttime. I’ll find out more next time I have my a1c. I’m hoping for something better than my last 7.6 (ouch!) So that’s that, and what’s what in CGM for Sarah.

Information & Organizations

Are you curious about how universal health care works in Canada? Here is a great what’s what about health care in Canada: http://www.ourfuture.org/blog-entry/mythbusting-canadian-health-care-part-i

It seems I’ve managed to join yet another organization. Despite contention that perhaps I have too much on my plate, I am greatly intrigued by this particular network. The Minnesota Parent Leadership Network is: “A parent-driven and family-affirming children’s mental health system of care.” Their vision? “To connect, educate and support parent leaders to command change, demand solutions and transform systems of care.”

Sound like someone you know?

Speaking of organizations, if you live in Minnesota and you support and believe in the benefits of single payer universal health coverage, consider joining forces with the MUHCC (Minnesota Universal Health Care Coalition.)

Caucus Events & the American Dream

I attended my first caucus yesterday, DFL caucus to be sure.

I walked away in a bit of a daze, appointed as the new Precinct Associate Chair and buzzing a bit, also, over the 26-8 Obama tally in my precinct. I was also a bit abuzz about the two resolutions passed in my precinct, with absolutely no opposition, in support of comprehensive, universal, and in one instance single payer health coverage for all Minnesotans.

Wow.

I find myself wondering how exactly I managed to take on one more task (intriguing as it is) and then conversely wondering why exactly I stayed “inactive” politically and in the community for so long prior to this year.

There have been events in my life which have led me to this path, primarily my family. As time wears on, my political and community focus seems more and more clear. I have developed personal stances on health care, poverty, community voices, disability policy, and so much more.

At first it seemed that my focus would be only special education and disability issues, but somehow my scope has broadened. I believe that my personal experiences only make my focus more valid.

Soon after I began Partners in Policymaking I resolved to have no fear of, nor shame in regards to, my past. Yes, I was in treatment for substance abuse. Yes, during this time period my children were in foster care and I was involved with child protective services. I completed treatment. I spent 90 days in a halfway house. I moved to Saint Cloud with no furniture, no means, financially and spiritually broken. I have been a broken spirit navigating a broken social system intended to help, but in actuality perpetuates the failures that drive its services.

Slowly, and through grace and personal persistence, I have been able to rebuild my family, myself, my home, and my spirit. I have a small degree of personal success. There is order in my home, compassion in my heart, and smiles in my children’s eyes (and on their faces). I wonder why my story is unique. Success, although limited, is not necessarily encouraged in our society….and failure is used to quiet the social masses.

We are all human, and we all have basic human rights. I regularly meet low-income, poor, and broken individuals and families. They are stuck in a system that is content to leave them broken, and does not encourage healing.

This is why I support universal health care under a single payer system. I support equity in health care, with receipt of such care recognized as a basic human right. I support equity and equal accessibility to higher education, housing, jobs, transportation, and healthy food. I support healthy communities with programs in place designed to help children and families succeed. I support programs that allow families on assistance to have things like savings accounts (with real money in them) because this breeds independence from welfare programs. I support back to work programs which do not include the “cliff” of loss of benefits when you begin a job.

These are my dreams for America.

What are yours?

(And while you are up and about blogsurfing, check this out.)

In the Paper

I just can't seem to stay out of the paper lately ;)

Check it out!

Caucus Much?

Today is the day, in Minnesota, where those in the DFL can go to their caucus and do their part (in our two-party system) to ensure that their voice is heard. Go here if you aren’t sure where to go tonight!

I am doing my part to ensure that at least a small portion of low-income DFLers attend this event by inviting friends and neighbors, and even being the “ride” to the event.

What do I believe the platform should be for DFLers across Minnesota?

I’ve made it fairly clear here my stance on single payer universal health coverage, but I also want to have a hand in encouraging low-income and middle-income Americans to find their voice in politics, be it in regards to taxes, rebates, health care, public transit, employment, housing….All those things that are important to citizens, but are just a little different if you aren’t making median income and you don’t own a home (or you do own a home but can’t figure how you are managing to pay for it…)

Every voice is important.

I'm Not From Colorado, But.....

This is just too good.