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

Two Week Anniversary

I announced the big news elsewhere first and I'm sorry I ran out of steam and didn't put it here!

I had my surgery for uterine cancer two weeks ago.  I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch.  It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it.  This was a relief and means I am stage 1a, although grade 2.  Stage 1a is the best :)  The cancer was caught early and the surgery should be curative!!!

So I'll be around to continue to write meaningless drivel in blogs ;)

Back to the subject of this one:  I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town.  I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint.  I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.

Don and my mom have been doing so much so that I can get better.

My mom works all day to cook and clean and do laundry.  This is a gift from heaven.  One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't.  Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now.  As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know  in the tech world.

But I am trying to enforce rest periods on mom.  Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake.  I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time...  I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.

And now Mom's expected to be a nurse!  Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.

When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out.  And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures.  He's been my uncredentialed doctor here at home and has truly helped keep me alive.  I think he's ready to do surgery now ;)

The wound being infected means I'll have a longer recovery period than previously estimated.  But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.

I am so glad the cancer is out.  There are so many reasons I don't want to leave the world right now.  I am so grateful I have a good chance to stay.  I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.

I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed.  I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live.  I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !

(((hugs)))