A glitch in the plans

I need a sentinel node biopsy before or concurrently with surgery. To trace the initial lymph node(s) to which a breast drains, a radioactive dye is injected on either side of a tumor, and then a blue die is injected in the same places.  This has to be done from 2.5 to 15 hours before the node can be removed and biopsied. The sentinel node is located by a hand held Geiger counter. Then, the node area is opened and the first one to three blue nodes are removed and biopsied. That is scheduled for December 20.

My mastectomy surgery is scheduled for 12 hours on January 10, a Monday. They don't do sentinel node dye and tracer until 9 a.m. weekdays and never on Sunday. My only choice was to wait until the third week in February to have the mastectomy and node biopsy at the same time, or to have the two separate surgeries. I chose the latter which is also my surgeon's preference.

This way, I'll know when I go into mastectomy surgery whether the lymph nodes are involved.  It will probably be a relief to have that information before Christmas though I hate having to go through general anesthesia two times and have two surgeries.

The difficulty in scheduling this mastectomy is not because I'm in a socialized system. It is because the type of surgery I'm having requires the coordination of several different doctors. Two of them, both of whom must be there, do the DIEP flap and are the only ones in Colorado who do that particular surgery. In fact, there are only about 60 in the nation who do it. From what I understand, there is only one hospital (Sky Ridge) that is equipped with the microscopes and other equipment to do the microsurgery.  I will spend a night in ICU where they will use doppler to monitor the blood flow to the newly constructed breasts. If I was willing to have a different kind of reconstruction, I could have been in and out already.

I have a list of women who are willing to talk about their experiences with the DIEP flap.  First on the list is my plastic surgeon's mother.  How's that?

I'm scared. This is whole new territory for me.

Just say No to Obamacare.

Which way to turn

I never realized what having breast cancer meant in terms of other people and various relationships. Everyone and her sister has referred me to a friend or consultant to get good advice. I've talked to a few breast cancer survivors and others who just seem to know everything about breast cancer.

I've talked to a couple of friends who have survived and really appreciate their precise explanation of where they were, the stage, the treatment, the pitfalls, and so on. I appreciate how informed they are and how well they could answer my questions. I've also communicated with friends who have knowledge of breast cancer from their various studies. Thank God for the Internet.

I've talked to others who can't really answer my questions because they can't remember, had no knowledge of their own cancers, or really have no experience. Some have been adamant about what various remedies I must take to cure my cancer. Others have been adamant about exactly which doctors I must see. I would have to interview for the next year to get all those doctors covered. Some tell me I shouldn't be treating mine unless it becomes invasive. Some have been adamant that I should have thermography and ultrasound before I believe anything about mammography or the biopsies. Others told me that the biopsies have already spread the cancer.

All of these friends are well-meaning. I am not complaining; just overwhelmed. I am ever so grateful for the time and care each has given me.

One friend sent me some good information from Dr. Ralph Moss, a world renowned cancer researcher.  Two of his statements about DCIS (ductal carcinoma in situ) especially caught my attention:

"Precisely what percentage of these latent, precancerous lesions might eventually progress to become truly invasive tumors is unknown, although it has been estimated that almost 50 percent of all in situ cancers will never progress and would be better left undetected and therefore untreated (Handler 2003)."

"Perhaps one day in the future there will be a way of distinguishing between those women whose DCIS poses an imminent threat of invasiveness and those whose lesions are harmless, so that treatment can be directed only towards those who truly need it. Currently, though, such a test does not exist."

That pretty much gave me my answer. My oncologist said the same thing.

I had thermography. It is a method of sensing heat within various organs. A breast tumor will give off heat and change the appearance and color of the output. My thermography did not pick up either of my cancerous lesions. $300, k-ching, k-ching. Then, I learned that thermography will not detect breast cancer until it has become invasive. So far, mine appears not to have spread although my surgeon is concerned about a 6 cm line of tissue between the two cancerous spots, and she is concerned about a bit of lobular hyperplasia. The thermographer begged me not to treat my cancer but to have ($300 k-ching, k-ching) thermography every three months, and to use various alternative, natural treatments and potions. Throughout my time there, I had to keep pinching myself into realizing I was not buying a vacuum cleaner or new car.

The other thing I've found is that people are incredibly kind to me now that I joined the ranks of the pink sisters. I've been desperately ill for many years with Lyme disease. The last eight years have been particularly hellish. I can't say anyone understood except my Lyme docs and probably my husband. Others just looked at me and moved on. Lyme is the invisible, lonely illness and no one understands the inner scream and isolation it creates. I feel a lot of grief about that and the toll it has taken.

Just say No to Obamacare.

Why not a health care system built on freedom? Part I

The "Patient Protection and Affordable Care Act of 2010" (aka Obamacare) is a major intrusion into the lives of Americans.  Governmental design of allowable health care products will result in major resource allocation disruptions across the country.

Classic “unintended consequences” are already beginning to manifest themselves and will only increase over time. Examples such as 3M shifting retirees to Medicare plans from the company-offered health plan, and McDonalds' struggling to find low cost “mini-care” plans to offer to low wage employees are just the beginning of issues.  

Poor design of plans, inefficient administration, inevitable rationing and decision making about the value of human life, and total loss of privacy in health care will cause revolt at the most basic levels of society over time. If the intention was truly to address the “uninsured,” more efficient ways of doing that could have easily been accomplished.

1. We must be free to buy insurance from any place in the U.S. provided the company is bonded and registered in its home state, and registered in the state in which it wishes to do business (diminishes fraud).

2. People must be free to move among insurance carriers once a year. Guaranteed issue is necessary and high-deductible insurance with spending accounts should be the norm. Tax treatment of individual purchase and employer-provided plans must be fair. Tort reform is imperative.   

3. Risk management will have to be addressed. Life and casualty companies hedge their risks through commercial reinsurance companies. Why not the same for health insurance companies? Perhaps there is a function for government to provide seed money so health insurers can create a framework to equalize the burden of preexisting cases so that one company does not carry an extraordinarily high level of those cases. Society is going to pay for those riskier cases one way or another, either through insurance rates or through taxes.

4. To discourage just-in-time buying, preexisting conditions must be restricted by a 12-month waiting period unless there is evidence of prior insurance (or Medicaid, parents, school, etc.). New options added to a basic plan must also have a 12-month waiting period.

5. The later people choose to buy insurance, the more expensive is the premium. If someone chooses never to buy insurance, so be it. At least no one is mandating; just encouraging. That’s what Medicare already does. The longer someone over 65 waits to buy into Medicare (B), the more expensive it becomes. Medicare recipients seem to know they must buy into Medicare within the allotted time period, or pay a higher premium if enrollment is late.  Younger people can learn the same rule.

6. Current mandates must become options. Mandates unnecessarily push costs up.

7. For people who cannot budget, let them pay their high premiums and put part of the premium into an account for medical spending. Many employers provide such a deal (including Whole Foods).  For those who accrue a spending account over the years, it is likely there would eventually be enough saved to pay for insurance premiums and deductibles for life. Medicare could be phased out, at least for most.

For those who want a more socialized system, allow Health Maintenance Organizations as an option, priced accordingly.  There would likely be a more limited opportunity to accrue a spending account balance with an HMO, and little to no chance to be free to choose care other than what the HMO allows. 

8. For people on neither Medicaid or Medicare, the average insurance plan in 2010 ran $1,147 per month for a family and $421 per month for a single.¹ A $10,000 deductible policy can be purchased for a Colorado family for $216/month and a single (25 years old) for $35 - $41 per month.² That means that a family could have zero additional out-of-pocket expense, pay for insurance, and have $11,172 per year ($4,560 for a single) to put into a spending account. The account balance could grow, and/or the deductible level could rise.

Medicare can be organized the same way with the recipient paying part and the government spending part of that $12,000 it already spends. That’s correct, the U.S. government already spends nearly $12,000 per Medicare recipient.³ That is in addition to what the recipient spends (about $3,500 – $7,500 per year).  The total bill is $16,000 to $20,000 per year, per person on Medicare!  At the time of this writing, a 64-year-old Colorado woman can get a $10,000 deductible policy with a prescription plan for $218 per month.⁴

A 65-year-old person, by the way, cannot buy private insurance. Once 65, every American is forced into government medical care if they want any insurance. Medicare recipients are allowed only to see government-approved physicians unless they have the financial means to pay privately and avoid government intrusion in their health care decisions. Medicare has created a two-class system in America.

If the federal government provided the $10,000 deductible and the Medicare recipient bought private insurance, the immediate federal savings would equal over $90 billion a year.  Additionally, the billions of dollars of yearly Medicare fraud and abuse would become a distant memory.  A plan like this should be an option for current enrollees and the norm in later years.  Many would immediately jump at the chance to regain their health care freedom.  In time, the Medicare tax could be reduced so that only those too disabled to have accrued a spending account could still be cared for.  

For people on Medicaid, provide high deductible insurance and a spending account. Incentives can be built in to encourage careful spending and saving. The amount spent per Medicaid recipient could be reduced simply by putting them in charge of their own medical care.  All sorts of creative solutions could be developed to encourage careful saving, careful spending, and eventual independence.

9. Competition and careful shopping bring prices down and increase quality, but pricing must be transparent and nondiscriminatory. It is the very discriminatory nature of medical pricing that makes comparative shopping and wise spending impossible.  

Providers are free to charge any price they want, but prices cannot be based on the insured status of the consumer, nor on who is paying the bill. That one provision of ending price discrimination would seriously inhibit the intrusion and power of government and insurance companies. It would free up the market, terminate provider "networks," price-fixing, and secret contracts; and stop inhibiting personal choice.  Consumers would become aware of what various medical services cost.

10. The primary role for government is to provide basic rules and then let people be free and private. It would return decision-making and privacy to physicians and their clients. Government and insurance companies, for the most part, wouldn't be involved in most medical decisions.

Colorado HB10-1330, the law that establishes a privately funded and privately operated medical dossier on every person, would be irrelevant because our medical issues would be private. The federal database, authorized and funded in the stimulus bill, would become irrelevant, too. When medical dossiers are irrelevant, medical privacy is protected. Americans don’t need government databases for health care treatments. Professional societies already provide guidelines in nearly every discipline, and are more up-to-date than government can ever be.

South Africa has adopted a successful plan of spending accounts and high deductible insurance.⁵ America can do the same.  Milton Friedman has understood a market-based health care system for a long, long time.  When will we learn?6

Where does my logic fail?

©Valarie Murphy
M.S. Economics

val1198@gmail.com

Adapted from my original article at Hear Us Now http://hearus-now.org/

¹Kaiser Family Foundation http://ehbs.kff.org/?page=charts&id=1&sn=6&p=1

² http://www.ehealthinsurance.com/

³ http://seniorjournal.com/NEWS/Medicare/2010/200100806-SovencyofMedicare.htm

⁴ http://www.ehealthinsurance.com/

⁵National Center for Policy Statistics http://www.ncpa.org/pub/st234

6Milton Friedman, How to Cure Health Care
http://www.hoover.org/publications/hoover-digest/article/7298


More good reading: Limited or Limiting Government?

Just say NO to Obamacare!

January 10 is probably the date

I have a tentative date.  At least it's after Christmas.  December 1, I'm going for a team consultation at the University of Colorado.  While I promised (below) never to go back there, I've decided second opinions from all disciplines might be a good idea.  Talking is okay with me but I'd never let them cut, poison or burn.

So long, it's been good to know ya'

I talked to my boob surgeon today.  When we thought it was only one small spot, she left the decision of mastectomy or lumpectomy with radiation up to me.  Now that they've found the second one, there is no longer a decision to make.  She says there is a six centimeter line that is likely to be malignant, at least in parts of it.  Now, the only decision is whether to dump one or both.

I believe my decision will be to dump both.  Then, I can use estrogen like there is no tomorrow, and won't have to worry about another malignancy.  My cancer is weakly estrogen positive so without a mastectomy, estrogen would be out plus I'd have to take those bone-trashing drugs.

The procedure I'm going to have is called a DIEP.
http://www.breastcancer.org/treatment/surgery/reconstruction/types/diep.jsp

Only one place in Colorado does this surgery.  It is relatively complicated, takes 10 - 12 hours, and involves micro surgery, but I think it is by far the best alternative.  The chance of ever needing another surgery is minimal - no saline bags to burst, no silicone to leak.

This won't be happening until January because the body stitchers are booked until then.

I guess grief is part of being betrayed.  I can't even be funny today.

The verdict is in

So, the second biopsy on a second cluster is also malignant.  That likely means a complete dumping of the boob.  While I'm at it, I'll dump the other too.  I have to suffer Michael Bennet for six more years; I don't need any other obnoxious boobs in my life.

I have so many questions.  When I first learned and started talking to specialists, I was like a deer in headlights.  Now that sobering thoughts are setting in, I almost feel like I have to go through the interview process again.  Maybe I can do much of it on the phone.

1) How much do Lyme disease and all the antibiotics I'm on distort the picture?  I already know I have to have the PICC line pulled before surgery.  I think the plastic surgeon said something about being on IV antibiotics after surgery, too.  Is that a new PICC line?  My head is spinning with PICC lines, IVs, antibiotics and so on.  The risk of treatment of late-stage Lyme is antibiotic resistance.  I'm already on Rocephin, Septra DS, Moxatag, and Biaxin. Knocking out long-standing Lyme is not a pretty picture.

2) Is eight hours of anesthesia any worse than four hours?  The reconstruction I want is far more involved than a simple whatever you call it (the silicone bag).  The DIEP flap uses tissues from my body to do the rebuilding and in the process, I'd get a tummy tuck.

3) Now, what about radiation and chemo?  With just the first, non-invasive tumor, the oncologist told me I probably wouldn't need him - only radiation.  My friend, years ago, had a double with no chemo or radiation and was great for several years.  After ten years, it came back throughout her body.  Since it was still breast cancer, it was treatable, but the treatment nearly killed her.  She's on a constant low-dose chemo, her  bones are trashed, but she is well and has a good job. Amazingly, while enduring her ordeal, she finished her Ph.D. in  infection control. I already decided I won't take any bone trashing drugs.

I never thought my boobs had much meaning for me.  In fact, I quite casually advised my friend to dump both of her boobs because she had so many problems with the other side (she had just dumped the third boob in her life).  Now, I'm feeling a great affinity for mine.  They nourished my babies and bonded me to them for life.  Perhaps it is irrational, but I hate to lose that connection.  I guess I'm beginning the grief process.  I expected the fear part but I hadn't expected the grief part.

And for good measure,
Just say no to Obamacare.

Damn!

It looks as though the second cluster is not a good thing to have. They are doing further staining to make sure, but it is appearing I will dump the boobs, just like we tried to dump Bennet the Marble Mouthed Boob.

BTW, I heartily recommend Rose for a breast biopsy. The one I had yesterday was a walk in the park compared to the one at Boulder Community Hospital. I was well-numbed and didn't feel much. The after-result was much better, too. I have a 2.5 cm hematoma from the first.

The Lord's giving me lots to do

I had a routine mammogram on 9/30. About a week later, they called me back for more views, and then recommended a biopsy which I had on 10/18. On October 22, my mother's birthday, I learned that I have breast cancer.

Last week I had an MRI and had my Boulder Community slides read by Rose pathology. The MRI showed the malignancy, and the pathology is the same. There was a recommendation for another biopsy on a second cluster in the same breast. I'm having that tomorrow and dread it with a passion. I was not numbed enough at BCH and the process was freakin' painful. Today, I doped myself up on Ativan to see if 2 mg is enough to calm me down. It did calm me but didn't put me to sleep. Maybe I'll take 3 tomorrow? :)

With my Lyme-impaired nervous system, recovering from anything like that is difficult. It is even difficult to recover from a social situation where there are people, noise, lights, smells, etc. Recoveries take from hours to days.

So, another biopsy tomorrow and then it will be time to make plans.

Catching up and railing against death panels

I haven't written since March as I've finally started feeling better and branched out my community of interest to include a little political dabbling. I suffered the heartbreak of the political world this year but will go on and look for a better day.

I got a PICC line placed and started on IV Rocephin on May 24, 2010.

This is what's wrong with the American medical system:

For four weeks:
$19,320 = infusion company billed to Blue Cross (including $9,804 for the medication)
$4,658 = allowed as "reasonable" by Blue Cross (including $2,178 for the medication)
$932 = my cost (20%)

Not long after I reached my $6,000 deductible, Blue Cross dumped me off. After the dump, my only choice was to go shopping. I found everything I need, including the medication and all IV supplies for $326/month. Some of the supplies come from my neighborhood pharmacy, and some from the Internet.

I reduced my share of the national health care bill by a whopping 93%. I did it by shopping carefully, spending my own money, and being able to operate in a free market, unrestrained by government. Surely, those from whom I buy are making a profit or they wouldn't be selling. The initial infusion company was not only making a fair profit, but was absolutely taking insurance (and Medicare) for a ride. My sense is the slush fund we call Medicare has destroyed any sense of sanity in American health care.

Government and insurance companies like Blue Cross base their decisions on the guidelines written by the Infectious Disease Society of America (IDSA). IDSA denies that late-stage Lyme exists, and that any Lyme, regardless of how sick the person is or how long she has been sick, is treated with just four weeks doxycycline. Period!

Interestingly, IDSA's guidelines were challenged by the Connecticut Attorney General. He found many irregularities in their writing, and found numerous conflicts of interest. Various panelists advised insurance companies, were parties to vaccine development, and so on. The group was required to hold new hearings and reconsider. No Lyme-treating physicians were allowed to participate. We don't have to wait for Obamacare death panels. They are already here.

Fortunately for me, there is an opposing group, International Lyme and Associated Diseases Association (ILADS), that understand late-stage Lyme, and contends that it can indeed be treated. This group understands that the longer someone has been sick, and the sicker the person is, the longer treatment is going to take. The good people from this school of thought have given me a chance for life.

God bless them, and God bless America.

In the beginning

Sunday, March 14, 2010

I got sick in June of 1985. I was a busy mother of five, very involved and active. One night as I got ready for bed, I noted my left knee was swollen. Otherwise, I felt fine. Over the next days I got so ill I could barely get up. Several times, my doc withdrew bright yellow liquid from my knee. He said the color indicated inflammation. My sed rate was elevated but everything else was normal. He mentioned Lyme disease in passing but diagnosed me with ankylosing spondylitis, one of the "big three" forms of arthritis. I took various NSAIDS for the next 14 years.  The meds numbed the pain and I would have killed to get them. I've never been well since that day in June.

Three years later, we moved to Minnesota. When I saw a doctor to get more anti-inflammatories, she said she thought I had Lyme disease, but the the test was negative. I've since learned that the ELISA screening test is accurate only 50% of the time, and particularly inaccurate after the initial antibody flare is over.

For the next nine years, I wore long underwear, summer and winter; and never went through a whole day without a nap. I made several excursions to the hospital for migraine treatment and injections to stop the vomiting. After nine long years of freezing, fatigue and weight gain, I was diagnosed with hypothyroidism. By then, I had added 55 pounds to my 96-pound frame. Thyroid medications were a miracle for me but I still was not well.

Fourteen years from the initial onset, I was in excruciating pain and running very high blood pressure. I had a parathyroid adenoma removed in 1999. Hyperparathyroidism causes hypertension. I'd been on three meds for the hypertension and stopped all of them. This time, I was convinced I was “cured,” and felt quite well for two years. Meanwhile, the baby of five was 19 years old. She was four when I got sick.  She used to love to sit on my lap, but from that day in 1985, I never was able to hold her again.  I lost so many of the growing up years with my children. 

Gradually, beginning in about 2002, I got sicker and sicker and my blood pressure started rising again. I went through episodes of extreme anxiety, insomnia and hypertension. Each episode was worse than the last. I was in the ER three times with those episodes. Each time, my potassium was a little low and my blood pressure was sky high. Oddly, the migraines stopped.

In 2005, I went through a workup at the University of Colorado Hospital. Once the endocrinologist determined I was not Cushinoid, she lost interest. Nothing there. I'd never go back to CU. In the summer of 2008, I went to Mayo Clinic in Minnesota. Nothing there either except hyperaldosteronism, but I already knew that as I had been on a mineralocorticoid blocker. The MCB blocks the effects of aldosterone, but the other symptoms remained.  The Mayo doctor refused to talk about anything else because he said I had come for an aldosteronism consultation. He was a complete asshole.  No cigars for him. The extreme insomnia, weakness, sweats, anxiety (brittles), heat intolerance, nausea; stomach, muscle and joint pain continued. I had a thorough workup at National Jewish in Denver. They looked for every imaginable problem including sarcoidosis, carcinoid, tuberculosis, adrenal adenoma, phoechromocytoma. Nothing. The cardiologist did come close in mentioning possible "atypical mycoplasma infection" but he didn't pursue it. No cigars there either, but I found National Jewish thorough and competent for what they did.

Finally, my endocrinologist determined that I was nuts and sent me to a shrink. The shrink said, "You're not nuts; you have something organic going on." He's a smart guy and a good guy! I'm still scratching my head about how that endocrinologist decided being crazy destroyed the cartilage in my knee.

Finally, in November, 2009, I was diagnosed with Lyme disease, Bartonella, and Babesia by a Lyme-literate physician. I periodically travel to California to see him. Four months out, on Levaquin, Doryx, and now Ceftin and Rifampin, I am a little better but certainly not well. I also have that wonderful psychiatrist who has helped me with anxiety and sleep medications. Without those, I don’t think I could have made it this far. I have been sick so long, I don’t know if I’ll ever really be well again.

Levaquin for Bartonella, Yes! (still miss Rob)

Tuesday, December 1, 2009

I've been on Levaquin for just over two weeks; three days on the full 500 mg dose. My anxiety is so much better and I feel much better emotionally. My only problem is severe pain - hips, lower back, arms, neck and sometimes, a headache. I hope those issues are passing. Maybe Burbur and Blt are helping the anxiety?

My brother died on September 25. He fought a hard fight to live but just couldn't overcome the infections. God, I miss him.

Rob is gone

Sunday, November 15, 2009

My brother died on September 25, in the evening. He is buried at Fort Logan National Cemetery. Even now, it is hard to write it. Rob, I love you and miss you.

I am

Friday, November 13, 2009

I am a tick bite
I am a sore throat
I am fathoms of fatigue
I am desperate
I am IVs every 12 hours for months and months
I am aching joints
I am T cell poor
I am Clafarin
I am called a nut case
I am a war under the skin
I am a doctor who misdiagnosed
I am unable to sleep
I am a mid-line
I am a heart gone crazy
I am a $175,000 cure
I am scared
I am a red rash
I am a Herkxheimer that feels like the flu
I am a silent epidemic
I am a killer
I am able to fuck with your head
I am a doctor who had Lyme Disease
I am three years of antibiotics
I am a spirochete
I am an infusion clinic
I am a firing squad without rifles
I am everywhere
I am hanging on by a thread
I am a borrelia block
I am a syringe
I am an immune system forever damaged
I am Lyme disease
I am lucky you didn’t kill me
I am a survivor
Kay L Cox

Lyme disease - the invisible illness

Saturday, October 31, 2009

1. The illness I live with is: I don't know.  Lyme & co-infections.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: being constantly brittle
5. Most people assume: I am fine.
6. The hardest part about mornings are: Every day is difficult
7. My favorite medical TV show is: Can't watch them.
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to sleep without constant waves of fright
10. Each day I take a lot of pills & vitamins 44/day.
11. Regarding alternative treatments I: am not there yet.
12. If I had to choose between an invisible illness or visible I would choose: Visible by all means.  A permanently broken leg would feel much better.
13. Regarding working and career: What's that?
14. People would be surprised to know: ???
15. The hardest thing to accept about my new reality has been: Staying alone and quiet
16. Something I never thought I could do with my illness that I did was: Not there yet.
17. The commercials about my illness: What commercials?
18. Something I really miss doing since I was diagnosed is: Socializing, politics, walking.
19. It was really hard to have to give up: Politics
20. A new hobby I have taken up since my diagnosis is: Facebook
21. If I could have one day of feeling normal again I would: Run.
22. My illness has taught me: to be sad, very sad.
23. Want to know a secret? One thing people say that gets under my skin is: ??
24. But I love it when people: understand and let me talk.
25. My favorite motto, scripture, quote that gets me through tough times is: it will get better.
26. When someone is diagnosed I’d like to tell them: Oh, God!
27. Something that has surprised me about living with an illness is: how resilient I really am.
28. The nicest thing someone did for me when I wasn’t feeling well was: cook.
29. I’m involved with Invisible Illness Week because: ??
30. The fact that you read this list makes me feel: understood.

I wish you would watch "Under Our Skin." I have three copies of it and will lend them.

I will heal you

Monday, August 31, 2009

2 Kings 20:5 I have heard your prayer and seen your tears; I will heal you.

I'm pretty bad

Thursday, September 3, 2009

I took three weeks of doxy, ending August 23. I am bad, bad. Very racey and brittle. It goes on day after day and I don't know how much more I can take. And then I think of Rob. He is fighting for any kind of life. I need to be more grateful and less sad.

Good bye Reagan

Thursday, August 20, 2009

We had to let Reagan go yesterday at 3:30 p.m.; complete liver failure. She could not live. Golly, we're going to miss that little girl.

My brother is still not out from under sedation but all signs are good. His kidney function is improving.

Praise the Lord from whom all blessings flow.

Am I better?

Monday, August 17, 2009

I've been on doxy for two weeks and two days. I have six days more before I re-test. I've had a few days where I can honestly say my brittle* has stopped. That is the first break from brittle I've had since late 2008.

I've had a rough few days. Reagan is in the hospital with something wrong with her pancreas. We don't yet know what it is.

Tonight, my brother went into surgery to get two new lungs.

If those events don't bring on the brittle, then I have to believe the doxy has helped.

Pray.

*Brittle = Weak, shaking, tremors, inner tremors, sweats, anxiety, nervous, shoulder and neck pain, etc.

Doxycycline

Sunday, August 2, 2009

I started doxycycline, 100 mg x 3/d. Perhaps its a placebo effect but I think I'm feeling a little stronger. Maybe it just because I am so desperate for anything to work. I didn't have bloating tonight and I know that is different.

Brother is going to get two lungs. He's #1 on the list. Pray.

New Hope

Friday, July 24, 2009

My brother is going to get one new lung, so now he waits ...

My episode, for sure, has broken. I'm thinking brought it on this time by using cortisone cream on my breast rash. CC is the only thing that has made a difference. I have had extreme anxiety, terrible sweats, weakness, inability to think, back pain, and no sleep. This is the worst one I've had since December of 2004.

I came across this today:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

For anyone chronically ill, it is a nice explanation.

The episode broke

Tuesday, July 21, 2009

This episode, I believe, broke today. My bloating is much lessened and the anxiety is not so great. I haven't been tempted to take an Ativan.

My brother still doesn't know if he'll get new lungs. We were all so hopeful but CC seems to be putting off a decision.

I pray.

Please be seated

Sunday, July 19, 2009

Today, I sewed cushion covers for my patio chairs. By the time I was half done, I was sweating profusely and shaking like a leaf. Sometimes, this is just too hard but when I get too discouraged, I think of my brother who cannot breathe. God help me. God help Rob.

Posted by Val at 5:07 PM 0 comments