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

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.

Resucing My Brain, And Drugwatch.com

I've had a terrible time lately with memory and concentration problems.  These have been typical for me over the course of the years with lupus cognitive impairment.  However, all of my autoimmune-related blood work is actually really really good at the moment...good enough to have me wondering if my lab report got switched with someone else's!  Not that I believe the tests we currently have available are always accurate monitors of lupus activity.  Big NO there! :)


But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE.  It is actually a different sensation that I seem to feel inside my head.  I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward.  I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III.  Or Rush Limbaugh.


Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus.  I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.

I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.


Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition.  Quote of the day:  "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."

After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike.  So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.


And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax.  Aha! Eureka!  But it turns out that it is not recommended suddenly stop this med, so now what do I do?  "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!)  Because now the differential diagnosis for my half-dead brain is very very complicated.


Usually when I write, words just pour out.  Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless.  But no longer.  It is hard to get through a paragraph without going blank at some point while writing it.  And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable.  I'm actually lucky that I caught myself when I was about to post this on the wrong blog!

For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.


So I want to thank this website: http://www.drugwatch.com  *.  This is where I learned more about my new medication.  The site has a wealth of information which could be crucial knowledge for anyone taking medication.  Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research.  Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.

The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.


Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)



* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide.  Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.