Happy 2012!

I'm nervous about what is going to happen to my health care in 2012, since I'm dependent on Medicare and Medicaid.  Ominous dark clouds ahead.  But I am making myself approach the new year with some happiness in my heart anyway.

Hope everyone out there has a happy new year :)

A lot going on

My last post said some of it.  Here is an update: http://beepbeep.livejournal.com/1171657.html .  My family is going through a lot.  And I want to help where I can.

What frustrates me sometimes is how I can't will my body to do more than what it wants to do any more.  I have my birthday Sunday and I was born on "Boss's Day."  Well, my body is the boss.  The rest of me just has to go along.

I'm still here, but...

Do you know how it is when everything hits at once?

I've got some things going on including some legal and some medical.  For me, that is.

But one of my aunts got lymphoma of the brain.  She has RA.  She had surgery/treatment and she was to be recovered from severe dementia right now.  And she isn't.

Another beloved aunt has Parkinson's and is now coping with dementia.  She just broke her hip and responded well to surgery, but for some reason developed a terrible bedsore and possibly pneumonia as well.  I fought pneumonia myself after catching it in the hospital in late February, not as severe as hers of course, but it reminds me of how sometimes hospitals have bugs going around.  Incidentally (!) she is also blind from macular degeneration.

Anyway, I am praying for them.

Another aunt is developmentally disabled and I just received a call from the facility she is in because they needed a relative to give permission for her infected thumb to be treated.

My cousin and his wife had been the contact persons for aunt lymphoma and aunt developmentally disabled. But cousin himself had brain cancer a few years ago and now has leptomenginial carcinomatosis.  Not the greatest diagnosis.  His wife, who is a truly brilliant and strong woman who has been coordinating the responses to our family's current medical madness, has severe MS herself.  How does she do it?  I don't know but I am planning to go back east, where they live, and hope to help her out despite my own challenges.

My sister is being wonderful through this and I hope in some way I am helping her out.

Btw she and I both have SLE.

Our father died when we were very young.  I was six and sis was four.  We know little of his family.  Our mother's family is the one who is being affected by all of the above.  We don't have an endless supply of aunts and uncles and have already lost some.

All of this at once??? Maybe it is just the way of things.  In some way it helps keep me numb so I avoid a lot of searing emotional pain I otherwise would have.


Prayers for everyone.  Prayers for you, who read this.  Sending out love.  It is the only way to live.

Insecticides, No No

I've always been made sicker than the bugs from insecticides.  When I was in a serious flare one year, I was exposed to a formulation error in the pesticide used to spray my parents' house.  My mom and I both became very sensitive to chemicals for a long time...like not being able to walk through pesticide or cleaning product aisles in stores!  I was, in a way, lucky it affected her, or no one would believe me.  Both of us found the chemical smell in the house to be horrific, but I was sick enough to have to go to motels and running up a huge bill, until it became clear that I would not be able to go back home for some time and needed to look for an apartment which my parents had to pay for!  Needless to say, this did my lupus no good.

So headlines about pesticides and autoimmune disease do catch my eye:

Exposure to Insecticides May Up Autoimmune Disease Risk:

http://www.doctorslounge.com/index.php/news/pb/18307

Lupus Prayer Day, Sunday, June 12 · 7:00pm - 10:00pm

This is a Facebook event and I'm hoping this link works: https://www.facebook.com/event.php?eid=120598591357551

However, since it is a prayer day, I doubt Facebook attendance is required!

I'm assuming that any time of day, in your time zone, is fine.

Info:

Contact Jana at crossestocarry@live.com
On this day we are asking you and all your friends to post on your status, "Today I send prayers out to all that suffer from Lupus and for those we know and love that has Lupus, for those which has taken the time in their lives to help "US" to find a cure" Please spread the word among your friends, God hears us always, this day we pray for our mircle.

Resurfacing...again

I've had a weird year so far.  In January I kept having flu-like illnesses with fever over and over again. After these stopped, in February, I started getting weak and shaky. This finally got so bad I had trouble eating without spilling.  It turned out to be severe anemia and I had to have two blood transfusions.  I'm taking iron pills now but do not know what is causing the anemia. It could have something to do with the radiation treatments I had for the cancer.  

When I left the hospital after the anemia treatment, I had a pain in my chest. I ended up having pneumonia and severe bronchitis following the pneumonia for about 2 1/2 months.  Now I've been up and around a very short time and the things that have piled up, like email and paying bills and even laundry, are quite something!


Maybe one of these days I can do something more recreational, like writing in this blog...

Migraines, redux

Don't they suck?  I know my fellow migraineurs agree...and many lupies are prone to them.  Right now I've got the blinding pain and some nausea threatening to become severe nausea.  I took a Frova and hope it kicks in.  Right now I've got to do the dark silent room thing.  So much for my plans for today...unless Frova does the job.

I can handle my personal plagues. But I need to be allowed to live.

I have been going through something which feels like the plagues of Egypt.

 I'm told my lupus is not doing too badly right now. I would think that would bring on a time in my life where I could actually do things I want and need to do before God calls me home. I have been so frustrated with all that I want to do in my head, waiting for when my body can get out of bed and LIVE.

I had a couple of good weeks in August. Started to swim again, even. Felt good. I had just moved and wanted to get the house in order. I made a start.

But at the end of August something happened. I caught a GI "stomach flu" bug. At least I think it was a bug since Don had it too. Fever even.

Don got over it. I didn't. The fever left but the nausea and diarrhea did not go away. I got sicker and sicker. I lost weight because I could only keep down a very low amount of calories. Unfortunately the price for the weight loss was severe weakness. I began to have falls. One of them had me ending up with my left side smacking against concrete. My jaw still hurts. I broke my ribs. I was in agony. The GI stuff did not go away. I had to go to an ER to get rehydrated. I had to go again and it was found that I had pneumonia. It was not easy to keep the antibiotics down but I did it.

I had this misery until mid-December when my rheumatologist made a change in my meds. This doctor has been my hero for many years. I thank God often for him.

I did have a good Christmas. But in late December or early January I had some illness with a high fever. This happened to me three times in January. At one point the fever was 105 degrees. I was told my lupus was ok and that these were just bugs I caught. At least one of them Don had so maybe that one was a community illness, but to have flu-ish symptoms with fever three times in a month? I think that is odd. I wonder what it was.  I have no idea, myself.

February brought severe weakness, breathlessness, and feeling like I couldn't think well. Then I started having tremors. They did not go away but got worse and so I went to my primary care doc to let him know what was going on. I was so weak I couldn't even park the car properly and a wonderful person from the doctor's office was kind enough to repark it for me.

My primary care doc is always very thorough so he ordered several tests. It looked like an electrolyte imbalance but turned out to be anemia. I was driving to a family event when I got the call from my doc to turn around and head for the hospital. I went home first and realized I was incapable of driving any more. I had trouble just getting myself to the bathroom. My best friend came and took me to the ER.

In the ER they gave me two emergency blood transfusions. I felt better after them although was told my anemia didn't completely resolve. Also, the cause is unknown.

I began taking iron pills and also making an effort to change my diet to include foods which are high in iron. I prefer a vegetarian diet but never seem to be able to stay on one due to some deficiency or another.

But I had to stop taking the iron pills. At first they made me very nauseated, but I bought some iron pills with a lower dose than the ones my insurance paid for and was able to tolerate them. Just another addition to my massive over the counter medical expenses. If I did not have financial help, I would not be alive. My friends and my family and my health care providers and all the help they give me are why I am still here. I love them all.

Anyway. I had to stop the iron nonetheless because I did not want it to interfere with the antibiotics I was taking. I was given doxycycline in the hospital for a UTI. But soon after I got out of the hospital, I was diagnosed with pneumonia. I was given a relative of Keflex. That seemed to work on the pneumonia that was first discovered, but an xray then showed either a migration or a new pneumonia. I was prescribed Avalox but could not afford it; my insurance substituted Cipro.

Off the subject for a moment...fyi I still have some brain involvement. It shows up suddenly in odd places. Like I will forget something I know perfectly well but I have to wait awhile before it bubbles up out of my brain. Right now I had to copy and paste from a dictionary to spell "substituted" correctly. When I was young I got awards in English. I know how to spell. But my brain just fritzes out when it feels like it.

Moving on.  The pneumonia either migrated or continued. I got Avalox samples from my primary care doc. And I've slept, slept, slept. Been mostly out of the world. And now at last I am feeling better. Today I was so excited because I was able to be out of bed and do some laundry.

I did have two nasty falls today. One got the computer dropped on the floor. This has happened before. I could never afford to replace it and am so glad it is still working. The other fall had me smashing against the dresser and I am so grateful all of the stuff there didn't break. I did bang against the tea tray and got pasta sauce all over me. Yes, I eat on a tea tray which Don brings in every night with food for me.

I have to live with the possibility of these kinds of falls. There is some nerve in my left leg that makes the leg go to sleep easily. I have trouble after eating in a restaurant unless I make an effort to stand now and then. My leg gets so numb it is useless. Sometimes I injure my foot or my ankle because I have to stand to get the leg to live again and I can't feel what I am doing until the circulation comes back.

I could list a lot of bizarre and nasty things I just have to live with but it's not all that important. What I want to say is that even though my health sucks I love my life and I love whatever I can do to help others as well. I have found many ways to be productive, to connect with the world, to find joy even with my continued health problems. I am so grateful for my life.

But I am tired of politicians trying to kill me. The budget cuts in my state's Medicaid (made by a Democratic governor, btw) will probably make me ineligible again. When I was ineligible before my poor mom paid all of my copays. Now she has no money at all. I don't know what I will do with another round of this. My copays will exceed my income.

The current proposal on the federal level to hand Medicare over to the loving care of the health insurance companies, while lowering taxes on the wealthiest of our citizens, in the name of reducing the deficit, resembles nightmares I have had before. Where I wake up and babble about the dreams and someone always tells me to calm down since my exaggerated fears will never become reality.  Never. Ever.

Please oppose the life-threatening proposal. Someday you too could be disabled, or a senior citizen, or have people you love in these categories. Why should we put lives on the line?

 I want to live and I know the rest of us do also. There are so many other ways to cut Medicare humanely. There are so many other ways to reduce the deficit humanely. I beg people to email their representatives. The Republicans need to hear from the people they represent who want them to pursue the many other ways to reduce the deficit without threatening the lives of our citizens. The Democrats need to be told that as the majority party they have a duty to stand up for the lives of our citizens instead of waffling and infighting.

 Maybe we really do need campaign reform so that all of our representatives are not pressured to mainly represent the interests of those who provide their campaign funds.

It would only be a gesture, but I think an important one, for our representatives to lose their pay once they are out of office and face the job market and the retirement planning the rest of us have to deal with, including needing Social Security. I think they should also be part of our health care system instead of having their own safe and comfortable coverage. Since they are willing to toss away my life and so many others I think it is very unfair that they are cushioned and protected, with our money, to never have to face what I am facing.

I wish everyone I know would email their reps now and tell them that people they care about need Medicare and please leave it alone. If they can't think of any other ways to reign in the deficit, refer them to me. I'm happy to do their jobs for them if it means saving lives. It's not even that hard. It just means throwing inflexible ideologies away and not needing any campaign funds from anybody.

Well, now I have to go wipe myself all over with a towel. I am having severe hot flashes and chills. Can't have any estrogen or that could wake up the cancer. Sigh. I've always hated the heat.

 At first the flashes were literally every five minutes, so now that they are down to about two an hour I can begin to cope. I also am so grateful to be in a comfortable home with cotton sheets and a fan I can have blowing on me all the time.

 I think of the devastation in Japan and would never complain about my plagues of Egypt. I love my life, as I said before...and I want to keep it. Please help me and tell our leaders to let me live?

Link:
Write Your Representatives

Welcome to the lupus world, Benlysta!

It's only the first drug approved for lupus in about 50 years. Big news, ya think?

I could not be more thrilled. I've seem to have had my own serious lupus whipped for now into milder lupus. But this drug is a new and safe alternative for ppl with serious lupus. As a lot of us know, long-term high dose prednisone (corticosteroid) has side effects of major doom. I myself got the cataracts in both eyes, obesity and metabolic syndrome, diabetes, serious emotional lability (how to not make friends and influence people), the infamous "moon face", and I don't feel like listing more. I really welcome the new drug as a beacon of hope for people I know and will meet in the future who have serious lupus goin' on.

Some info from the Lupus Research Institute. I wrote out the url for ppl whose technology is giving them a bad hair day.

http://lupusresearchinstitute.org/news/discoveries/11/03/09/fda-approves-benlysta®-lupus-breakthrough-millions-sufferers
You can even see my doctor there!

It got through the FDA, a miracle in itself, and if it works as expected I think we've got a milestone on our hands!

Where have I been? The people who have now dropped me wanted to know...

I know I'm not the only rheumie (rheumatic diseaser) who disappears when I get really sick. My thoughts are with my family, my friends, and everyone whose lives I touch in some way. But I've been down for the count. I can't tell you how many times I've fallen asleep with the computer in my hand. Sometimes it slips out of my hand so I'm glad when I'm ill I use it in bed and not somewhere where it can be grasped by gravity for a big trip. I've also fallen asleep while eating...literally with a fork in my mouth full of food. I get TIRED.

I had about three months of The Mystery Disease. Diarrhea, vomiting, dehydration, falling, breaking ribs, the beat goes on. It started with a GI infection at the end of August and ended with my rheumatologist changing my meds on December 9 (I remember the date!) Even my gastro doesn't know what was wrong with me.

So I was able to have Christmas. However, in January, I had at least three bouts of flu-like disease with fever. For at least two of these, my symptoms matched what was going around in the community. Don't know if my immunosuppression played a role. I basically have no B cells, secondary to an experimental trial which included rituxan some years ago...which made my lupus a LOT better.

Anyway, after the flu-y thingies were over, I ended up with a lot of fatigue. But the fatigue got worse. Then I started being breathless with exertion. I have seasonal asthma; was it showing up? Docs said maybe. Soon I couldn't hang up my clothing. But I've been sick like that before when I've had lupus lung involvement. But my sed rate was not high. Then I started shaking. This was weird. It was like I was developing some scary tremor. I could not type on the computer easily or hold a drink w/out spilling. I made an appt with my primary care doctor and had to be very careful driving there. I was lucky that the people in his office are so nice that one of them volunteered to straighten out my car in the parking lot.

Primary care ordered blood tests. The next day, I tried to drive, in the rain, an hour south to go to a family event. I got a phone call and it was from my doctor. He said I had a very severe anemia and I had to go to the ER to be admitted to the hospital. I had to change plans and go north.

I stopped at home to just grab a few things since I'm allergic to most soap products etc. And I realized I just couldn't drive the car any more. My incredibly wonderful friend, who herself is in a bad lupus flare, came to my city to pick me up and took me back to her city to the hospital!

I had my first (at least the first I knew about; never know about surgery) blood transfusion. I was in for three days.

When I came out, I felt a LOT better...but I was tired. I had a bit of pain in my lungs which I had mentioned to the hospitalist but I must look like a total hypochondriac or something. And of course no one could hear anything in my lungs. I think we often feel when something's up before the signs and symptoms become apparent and before we show up in some trouble on any tests. Anyway, now I've got pneumonia. I'm being treated with antibiotics. And probiotics in the hope that I don't get what IBS in combo with antibiotics do to dehydrate me. So far, so good.

I've gotten out of touch with folks again. This has happened so often in my life...sometimes for months or even a year or two. Naturally people think I don't care; I'm not interested; I'm unreliable; etc. And so I lose people.

I'm at the point where I want to make a huge email list that I can use to send out one email: sorry, I'm sick again. Please pass this on... But an awful lot of people don't get email. And an awful lot of people start seeing frequent claims of illness as just making excuses for not contacting them or that I am a useless and irritating whiner/malingerer.

Anyway, such is the life of some of us who are majorly chronically ill.

I DO care and I think of those I care about, those I've promised to volunteer for, everyone in my life, even when I can't be there in any kind of not-just-spiritual way.

Sigh. And please excuse what I'm sure are some errors in this post. I feel lucky to know what day it is, at this point.

How Many Other People Out There Have To Take Showers Constantly Or They Get Blisters?

I'll be surprised if a lot of people raise their hand.

The blisters are painful, so I'm always the one in the hospital becoming a huge fall risk, since I have to drag myself out of bed to the shower alone if no one will help me (I'm sure they think my rash and blisters are imaginary and just my idea of a little fun. I really do need to come in armed with a photo sometime, except I'm not sure I want to put myself through that even to get a good picture.)

Anyway, my skin seems really irritable today, so it's going to be at least two showers if not more. Splish splash.

Do I like hot flashes waking me up at 4 am?

That would be a NO.

I didn't think surgical menopause would be a lot of fun, and years of autoimmuning have certainly raised my pain and suffering threshold. So hot flashes are not the end of the world. But mine seem to be on the severe side (can my body do ANYTHING mildly?) and I am going to be pretty pissed off if they don't at least burn some calories.