my journey....

I am 40 a year old mother of two and I have had Systemic Lupus since my teen years. I also have an overlap of Rheumatoid Arthritis which caused severe deformities resulting in having the joints replaced in my hand at 35 years old which is virtually unheard of. My hips were next on the list to go bionic, but the hand surgery was so excruciating I declined it. My surgeon was very butthurt that he had to downgrade his new yacht. Since then I have broken my kneecaps off twice because the steroids destroyed what little muscle tone I had, very curious given my very strenuous daily workouts of just getting to the toilet on my own. Fabulous arm tone too as you might have guessed which did not hold up quite as well as I would have liked when I fell in my own kitchen and broke my shoulder in three places and cracked my humerus bone which was not really all that funny.

I was given last rights a little over two years ago because I was being treated with a type of chemotherapy that was potentially fatal. Having been hospitalized four times in a twelve month period, I was also considering a stem cell transplant because my lupus was refractive and totally out of control. I have tried literally every drug on and off label in every permutation and combination possible. In addition to traditional/western medicine, I have been macrobiotic, vegan, done cleanses, magnets, biofeedback, naturopathy, chiropractic, chinese herbs, acupuncture, alternative treatments, and mind/body medicine of all kinds. I have read so many books, blogs and articles on the subjects at hand, I could probably write one. In living with SLE and RA, I deal with chronic pain, severe joint deformities, migraine headaches, syncopal episodes, discoid lesions, elements of Raynaud's Phenomenon and Mixed Connective Tissue Disease, pleurisy, asthma, insomnia, anxiety, and the many side effects of my treatments such as massive scarring from high dose steroid treatment, just to name but a few.

I got fed up with the system and being sick all the time and so I fired my medical team and hired myself, figuring there wasn't much I could do to screw things up any worse than they had already done. Since 2007, I got off 13 daily meds, changed my entire lifestyle, moved from NYC to rural Utah and started over. I am still off daily prescription medication but I question this on a daily basis, especially when the pain gets out of control. It can be very scary at times not knowing when your health is going to tank again but I try to stay positive. I would never recommend that anyone do as I did and jump ship on their meds or their doctors but I know that there are people out there trying to live with this disease and they can feel very frustrated, alone, and scared. I feel these things too as I chart my own course with no maps, no guides. I feel comforted by the posts of others, I learn from them, I share their trials and triumphs. If you are still here with me, you must know some of the same struggles. I share my journey here, living with SLE, RA, and how I manage to live a ridiculously fabulous life in spite of the wolf at my door.

The photo with the top hat was taken in April, 2008. The profile photo is from January, 2009.

Thank you for visiting. Your comments are most welcome and much appreciated; please take a moment to visit the comments section, my virtual guest book...

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Essentially... screwed.

To anyone following this journey of mine, please buckle up and keep your hands and feet inside the car; this is about to be a very bumpy ride....

In case you can't keep your hands and feet inside the ride, believe me, I'll understand...

October 1, 2009

Hi Dr. H;

Thanks for the kind reply. Seems like in retrospect, I didn't know Dr. K very well myself; thinking back, I saw her when I was 21-22 maybe half a dozen times, and then not again until twice in 2007 when I had just made the leap to CAM. She had greatly impressed me because where many others didn't, she took her time - to examine me, to explain things, and she seemed smart and accessible. I still think she is a great doctor, maybe a bit more well suited to someone who embraces a solely western approach. I have looked further into the risks of IVIg and from what I can find, across the board I have a statistically higher risk of drowning in my own home or dying in an accidental fall.

Thank you very much for the article which confirms the unfortunate situation I am experiencing:

Sunday: "seizure" occurs at home, lasts about 3 hours intermittently.

Monday:The ER prescribed Ativan because they said this was the most common "starter drug" for "seizures".

Tuesday: Internist, Dr. H gives the diagnosis is Myoclonus (essential?). Agrees with Ativan and adds Cogentin. He ordered more blood work which should be back today. Also ordered a wheelchair as I cannot feed myself or walk unless on meds or without assistance.

Wednesday: Neurologist, Dr. S, Myoclonus is confirmed and he adds Mirapex (for Parkinson's usually). Orders an MRI of the C-Spine. Images taken within the hour. Should be online with results later today.

Dr. H, from what I can find, I need to shut down the inflammatory response as soon as possible to avoid these symptoms getting worse. I don't know enough about IVIg to know if that is the best choice to shut it down, and fast. It seems like a relevant option but steroids may be my only other option. The meds help somewhat, but are giving me dry heaves, confusion, and dizziness among other things. I am not sure I can get used to that.

I am sorry to have to ask for indulgence of your time like this but I am loosing my ability to type and it seems that the window is small to affect the permanent result of this new factor. My thoughts are leaning towards coming back out to Arizona as I felt the most comfortable with the comprehensive picture being approached and the complete person being treated. Phill is returning from California this morning around 12:00 noon. He has left a family friend with me 24 hrs a day while he is gone. We are in need of a little advice and help here and I am asking you to please call Phill and me for a conference call as soon as possible today to assist us in deciding what to do.

Sincerely,

Carmel

Sonata

Sleep:

Friday: Had gotten up at 5:30 am, drove home from Arizona, arriving just after 11pm. Finally fell asleep at 5:00am.

Saturday: Woke up at 10am after fitful sleep. Went to sleep at 6:00 am Sunday morning.

Sunday: Woke up at 11:00am. Went to sleep at 5:00am Monday.

Monday: Woke up at 7:00am. Went to sleep at 4:30am Tuesday.

Tuesday, Today: Woke up at 11:00am

all due to insomnia probably caused by pain.

Total sleep for 120 hours SHOULD be about 45 at 8 hours a night. I need about 9-10 hours to feel relatively "normal". I officially got a total of 19 hours in the past 5 days! The five days before were even worse, as I was in the car up to twelve hours a day, driving from Utah to Tucson, Arizona for medial appointments. I stayed in cheap hotels most of the time, even the one spendy hotel had a hard bed, heavy construction noise, and my two poor little dogs were in crates freaking out every night due to upset in their routine. I averaged 3-5 hours each night the whole week, while on "questionable" doses of sleep aids so I could get even just a little rest.

I finally got 5 and a half hours last night so I should be able to continue on later today to begin telling about the Center for Integrative Medicine and the Southwest Center for Naturopathic Medicine trip/appointments I had last week. In a word, thrilling! I'm usually sarcastic about that kind of thing but in this rare case, it was literally worth the trip in evry way possible.

Again, I don't like to copy and paste post but a conversation I'm in on the LFA Lupus Discussion boards is having trouble locating a good rheumatologist and has asked about my recent experience with doctors around here (Salt Lake, to Southern Utah), so I am posting the answer in case this is all I have the energy to do today:

K****, that's a little hard for me to answer: If your rheumy in Idaho currently is a joke, be prepared to loose a few pounds cause you may just laugh your ass off with the JOKER(s) I've just met down here. I have seen a rheumy two weeks ago (only one in a 500 mile radius) and she used to work at U of U for 20+ years and has semi-retired down here in St. George, working every other week.

In our first appointment, the following occurred: She began asking questions but frequently cut off the answer. Yes, I ramble a bit sometimes, not knowing what of all this hot mess will be important to somebody, but I had my fiance there to keep things moving along; he agreed the interruptions were mostly just curt and actually hindered the process. I had my medical file with me in a clear shoe box. 500-700 pages long. I keep the important stuff on top and I'm fairly familiar with it. She put in my notes that "only a FEW of the notes were relevant" but she did not ask to see or copy a single ONE! Not one.

I told her that two GPs had recently dismissed me in my small town area, stating to me in writing that the case was too complex and they were referring me to a specialist. She wrote that I had "frequently frustrated the doctors and they subsequently dismissed me". I told her I am in a flare and I can barely get off the toilet most days without assistive devices like handicap handles or more recently someone pulling me off the bowl and she wrote "I can do activities of daily living."

I told her due to my divorce agreement, I fly to NY up to eight times a year to see my underage kids, but she cut off the part where I have been there only once this entire year. She says despite this "level of functional activity" I **CLAIM** to have intense pain that varies hour by hour. Yes it does vary hour by hour, as I told her at 6pm I could manage to get off the couch, two hours later I needed to be pulled up. She also gave the classic, "but you look fine to me" BS line during the appointment. Pardon me if I don't look like Quasimodo, only FEEL that way. I'll try harder to look like sh*t next time :)

She also cut off the answer to the traveling; I ride in a ambulette-like shuttle to Vegas and have wheelchair assistance at both ends in the airport. My ex husband picks me up and drops me off on the other end. Some of these visits are less than 36 hours like for prom, or birthdays and they trash my health for days to weeks but what am I to do? Tell my kids - "see you next H.S. graduation", like that happens ever day? And yes, I missed my daughter's graduation this year from H.S. due to a flare. And yes, she interrupted and ignored the relevant parts explaining this.

During the appointment she repeatedly questioned, or rather DISPUTED, whether or not I actually have ANY overlap syndrome especially SLE. I asked her to pull up my blog to see the photos of my discoid lesions from the previous week. She would not. She ignored or discounted the neurological, pleurisy. discoid lesions and other symptoms that are lupus specific, told me AND wrote in my notes she does not think anything other than RA is involved here.

Basically made me sound like and over-educated, demanding hypochondriac on paper. Then I went back the following Monday to get the notes and lab results for my trip to AZ. The x-ray results were on file already and SPECIFICALLY stated: "radiographs show vascular collagen disease such as Lupus". The person creating the x-ray report had no anecdotes, other symptoms, or history - NO influence from me whatsoever - and yet my bones told the undeniable story.

Check this out: http://myfabulouslifewithlupus.blogspot.com/2009/09/when-you-need-hand.html

this is last night.

There is more about my recent search for a new doc in the Aug/Sept posts, including a photo or two on a good day with the discoid lesions.

That all said, she got me in to see a colleague of hers, "Dr. S", at U of U on Oct 8. I am almost SCARED to go, to face a 5-6 hour drive, each way, to deal with a like-minded doc. BTW she held back the blood results so far, maybe because she ordered some "special" blood work tests which I suspect came back showing SLE too. Maybe she didn't have a chance to sign off on the labs to add them to my chart since she's too busy thinking about choking on that shovelful of crow she may have to eat in front of me and her own colleagues.

I may sound a little "touchy" about that experience. Total waste of time and made me sooooo mad! Especially since a experience with an Internist recent here was very productive, and my subsequent appointments in Arizona at The Center for Integrative medicine were FANTASTIC. I have an appointment this Friday in Philly, PA with my old rheumy who is fabulous and willing to consider IVIg as an option among other things. It's a logistical and financial nightmare to get there but I am almost at wits end and I'm running out of time on my COBRA plan. Coincidentally, the doc in Philly has also just written the Lupus chapter in a book due to come out in 2010, co-written by the fabulous Rheumy doc I just saw in AZ at the Weil Center.

I am not sure what to expect in SLC; more of the same or maybe what they thought in AZ - agreeing with me that she had a pre-formed opinion, asked questions to support it, ignored answers to refute it, and then put her OPINION, not a DIAGNOSIS on paper. My blog is as long and winding as this post so if you'd like to call me, I can talk faster than I type. You can email me through Facebook or the blog and I'll send you my number if you'd like to talk about more options.

Best,

When you need a hand....

I would love to write about my adventures in Integrative Medicine Land from last week but I'm running on two hours sleep in the last 48 and my hands are really mad about that. Good things on the horizon though.... hanging in there.

Damn, I may just need hands to hang on with!

Good thing I've got extra long toes.

Memories....

September 14

These days it gets harder and harder to manage the "brain fog" that comes along with Lupus. I have a long awaited court date today and spent half of day yesterday sorting medical records, and the other half reviewing evidence for the case. Some things looked like I had never seen them before even though I know I have touched and reviewed every single item. Going down a checklist, I needed Phill to remind me several times, "what was I looking for?" and this could and did apply to the same item in particular. I had trouble processing amounts in information I would have formerly breezed through many years ago. The project took much much longer than it should have and what's worse is, I knew it. Blissfully unaware has its advantages.

This notion of blissful unawareness was brought back to my attention last week by a fellow blogger that is writing for todays "Bloggers Unite for Invisible Illness Day". She sent a questionnaire titled 30 Things You May Not Know About My Invisible Illness. There were some very thought provoking questions within and I dove into answering them as I was grateful to have a chance to update my blog, but lately hadn't been feeling well enough to do so.

I got to a particular question and it asked, "if you had one day to feel "normal", how would you spend it?'. This question really gave me pause. I have been ill since my age was still measured in single digits and so it was really quite hard to imagine what "normal" really is. A day free of pain, a day free of the awareness of my physical limitations and constant pain. I have to say that it made me very emotional, to the point of tears, to discuss this question with myself, or even Phill.

I've been on the yellow brick road seeking better health for so very long . I get tired, I get excited, I get hopeful, I get disappointed.

I get hopeful again.

Tomorrow I am off to Arizona to see a doctor that is one of Dr. Andrew Weil's team at the Center for Integrative Medicine and also to visit with the doctors at the Southwest Center for Naturopathic Medicine. Discounting pain and exhaustion, this is the best I have "felt" in a while.

It will be interesting to look back on that questionnaire in the future and see how I fare in my quest. Hope is a good thing. I can only imagine right now that good health is an even better thing.

Q and A

September 12

I don't usually copy and paste my entries but my current flare has been challenging me on a daily basis, making it hard to keep up daily entries. This morning, there was a question posted on the Lupus discussion boards on Facebook asking if having blood work that is "fine" but still experiencing SLE symptoms is within anyone's experience. I have had that very question brought to light within this very week. Pardon any repeat of information already within this blog as this is a lupus forum I was answering and the member know nothing of my background or health experience. This was my reply:

My blood results are not fine; current ANA off the charts, RNP factor off the charts and RA factor also off the charts. I've had JRA since before 13 years old, fluctuating ANA for several years and a definitive ANA which in conjunction with several other lupus criteria, lead to the eventual diagnosis of SLE at 18, I have been treated by several rheumatologists over the years. Some have literally written "the book" on lupus (Dr R. Lahita). When I lived in NYC which I did from birth till 38 years old, I didn't have a problem seeking medical help for ANY reason.

Since I moved to Utah two years ago, I have been "fired" or "dismissed" as a patient from a GP and Internist within the past two weeks because the situation is "complicated" and over their heads medically, experience wise, and also in regards to my personal philosophy for treatment. In some cases, it's my opinion that if they can't stuff handfuls of dangerous pills down your throat, they really don't see many other options. I use a integrative, complimentary, alternative way to treat my lupus which is entirely unfamiliar in my community. I often feel this can be to my detriment in getting care because of the attitude - "if you were REALLY sick, you would take the steroids or pain meds". Been there done that and statistically, I was no better on them for 20+ years than I am now after being off them for two+ years. Yes, I'm in a flare but I am doing my best to hold on and find the true root of each symptom and treat it naturally whenever possible.

I have heard, "but you look fine" so may times in the past few weeks, I could scream. The latest slap in the face is a new rheumy telling me after one visit, she doesn't think I have lupus at all!!!! She pointed to the vast majority of symptoms which overlap with my RA and seemed to totally ignore that you DON"T get discoid lesions with RA. I am trying to be patient with this and give due consideration to her ideas but it is of course very frustrating. She won't do IVIg even though it is safe and my insurance is cooperating, saying she has only done it with patients in the ICU or CC units. I've taken her suggestion to see a SLE specialist in Salt Lake City (five hours drive min) but I am concerned that the lack of SLE patients out here and the lack of experience treating it could bias a doctor and garner me an incorrect diagnosis or treatment plan.

In the meanwhile, I'm going back to what I believe in the most; Next week I have a visit with a doctor in Arizona at Dr. Andrew Weil's Center For Integative Medicine and two appointments with a team at the Southwest Center for Naturopathic Medicine,. This is a 12+ hour drive to the first appointment and even further for the next. All out of pocket including travel expenses to boot. I will keep searching until I find the very best way to manage my symptoms and even though I know there is not a cure yet, I know I can do better to help myself. Challenging your doctors can have risks; they may dismiss you as a patient or it can make communication somewhat of an uphill battle while you are already facing a war inside yourself.

It can also challenge BOTH of you to examine new ideas, think outside the box, and give both at least a sense of being hear and understood, EVEN if you don't agree. It can also change your mind as well if you become fixed that this latest treatment you've discovered or investigated is going to be "THE ONE" to finally help you. It helps me to keep a fair balance of expectations when I have to "prove" why a particular treatment is something I'd like to go for, or why I won't do or try others. A good system of checks and balances that benefits both parties but is probably more frustrating to the patient. Just remember this; a doctor is inherently your "employee"; you pay them for a service, you have expectations, they have expectations; they are an expert at their job and YOU are and expert on YOU. Blending those two skill sets can yield wonderful, positive results.

I would encourage anyone not satisfied with their current care to seek a doctor they feel is in line with your goals and philosophies about treatment, they may be hard to find at times but they ARE out there.

Best of luck and wishing you WELL.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Systemic Lupus, Rheumatoid Arthritis, Mixed Connective Tissue Disease.

2. I was diagnosed with it in the year: 1982 (RA), 1987 (SLE).
3. But I had symptoms since: fourth or fifth grade
4. The biggest adjustment I’ve had to make is: moving from NYC to Utah to improve my health.
5. Most people assume: I am not very sick because I avoid steroids and prescription pain medication.
6. The hardest part about mornings are: starting every day in pain.
7. My favorite medical TV show is: none.
8. A gadget I couldn’t live without is: a jar opener.
9. The hardest part about nights are: being in pain, insomnia.
10. Each day I take 14 vitamins. (No comments, please)
11. Regarding alternative treatments I: prefer, use, and advocate the use of natural healing methods.
12. If I had to choose between an invisible illness or visible I would choose: invisible.
13. Regarding working and career: I would like to be well enough to choose a career path not based on my health.
14. People would be surprised to know: I get panic attacks.
15. The hardest thing to accept about my new reality has been: the effect it had/has on my children and family.
16. Something I never thought I could do with my illness that I did was: get off daily medication.
17. The commercials about my illness: are nowhere to be seen where I live.
18. Something I really miss doing since I was diagnosed is: enjoying a pain free day.
19. It was really hard to have to give up: jobs I really enjoyed.
20. A new hobby I have taken up since my diagnosis is: developing a support group.
21. If I could have one day of feeling normal again I would: spend it in a beautiful place with people I love.
22. My illness has taught me: to have hope.
23. Want to know a secret? One thing people say that gets under my skin is: "well if you are so sick then why don't you just..." grrrrrrrrrrrr!!!!!
24. But I love it when people: ask how they can help and then follow through.
25. My favorite motto, scripture, quote that gets me through tough times is:"it will be okay in the end; if it's not okay, it's not the end"
26. When someone is diagnosed I’d like to tell them: be your own best advocate, cheerleader, and fact checker.
27. Something that has surprised me about living with an illness is: how hard it is to get healthcare if you are sick.
28. The nicest thing someone did for me when I wasn’t feeling well was: keep me company.
29. I’m involved with Invisible Illness Week because: I want to raise awareness for all those who suffer mostly in silence.
30. The fact that you read this list makes me feel: like the message is reaching further.

Thanks to Bloggers Unite for sending this survey along.

Tracking the Wolf

It has been a very challenging week health-wise, and in my quest to seek help with complimentary and alternative treatment methods. In additions to the usual aches and pains that accompany a flare, I have been dealing with dizzy spells, syncopal episodes, and mild "seizures" for the past several days. One trip to the ER, a return trip for more advanced diagnostic testing, and many phone conferences to try and coordinate a treatment plan. Things are moving along, but ever so slowly. I developed this double sided form to help me track my symptoms. This should make it easier to see if any patterns develop. Not shown is a female human form illustration which I have placed to the right of the list of symptoms so I can "x" where it hurts. I cut and pasted the illustration from a doctor's intake form and just added it to the final printed copy before reproducing.

My sincere thanks to Sara Gorman and her new book "Despite Lupus" for the suggestion of keeping track of my symptoms on paper and not through my computer. I used a similar form this week at the ER and the doctor was able to carry it off with him for a consultation. Carrying off my laptop would have been a bit more difficult.

Catch 22

August 29

About three years ago, I was sitting in a doctor's office in Long Island waiting to hear if I was eligible for a particular drug free from of treatment. I had researched the Prosorba Column and it seemed that this novel process of cleansing the blood of radical antibodies was my best shot at a remission. Unfortunately, it was also imminently due to be discontinued by the manufacturer. This treatment was very expensive to produce and administer and obviously not the darling or first choice of doctors and insurance companies. I was eligible for the treatment, having failed everything else, but the doctor advised me to proceed with caution.

He said, "I can get you a four to six months supply. But, even if it works, you'll be sitting across from me in six months right back at square one looking for another treatment." At the time, I didn't think I could deal with the brass ring slipping away from me; assuming the treatment worked, I would have six months free from the ravages of lupus, but would the end of that brief intermission from my ailments possibly make me worse off mentally, physically or both in the inevitable end? I opted for the chemo instead, which failed as well.

On Thursday this week, I hit the wall. Things were getting out of control; fever every day for weeks, seizures, exhaustion, discoid lesions everywhere, unable to sleep for days because of the intense pain, unable to sit, stand, drive. Unable to find a rheumatologist that could even see me for several months, let alone that there are no doctors I know of in the state of Utah that will do the IVIg treatment for SLE. I called on a fellow blogger's doctor in Missouri. He sees several hundred SLE patients from around the country. He has conducted dozens of IVIg studies in patients with SLE, giving them the treatment under strict and limited circumstances. We talked about my history, the possibility of obtaining this treatment, my chances of success, and the logistics involved in getting me back east to see him. He might be able to see me as soon as mid September. We'll talk again late next week after I get some additional blood tests done.

After thinking on this and discussing the pros and cons with Phill, I find myself drifting right back to that day in the doctor's office in Long Island, facing the very same questions. Pull the trigger and if it works I'm destined to need treatment for the rest of my life, or leave "un-well" enough alone and continue to suffer these miserable flares for the rest of my life.

Phill seems to think that I should consider the possibility that the road I'm already on is the best one. The Anti Inflammation Diet, the combination of supplements to combat the symptoms I deal with, the mental awareness of the devastating effects the disease can bring on top of an already difficult situation. The stress factor seems to play a crucial role in my case. This flare has been getting progressively worse. It's a case of chicken and egg to figure out if the symptoms started getting worse after getting the results of my recent blood work, or if I had the blood work done because it was already getting steadily worse. Could the blood work results have impacted my mental or emotional health in such a way to seriously worsen my physical condition?

I've been through that exact scenario before with blood work. I was sitting in the airport Seattle last August and I got a call from an ER doctor I had seen several days before. He said "I need the number of your Rheumatologist immediately". He sounded alarmed so I told him that I hadn't seen her for months and what was the matter. He said, "Your lupus numbers are off the chart and you need to go see her immediately". I asked him what the numbers were and then gave him her name and number. I had gone to the ER for an allergic reaction to mosquito bites which happened earlier in the week when my car broke down near a river and I slept there overnight. My legs were shredded with bites and swelled up until the skin was shiny and taught, turning black and blue, rendering me unable to walk. Did the allergic reaction trigger a flare in the lupus and put my numbers out of whack? As I sat in the airport and waited to change planes I shook it off: I felt "fine", well, fine for me at least. Just the usual aches and pains but nothing out of the ordinary. I got home at 1:00am and sifted through my medical records. I found that the number he had given me, the number he was so concerned about was about half what it had been in the past. I didn't know that information while sitting in the airport, but I did keep myself calm and reasonable, thinking, I am okay and there's no real cause for alarm.

I have some serious thinking to do about whether I'm going to move forward and seek this treatment or not. My gut is telling me that I need to know.... I have many regrets about not doing a course of treatment with the Prosorba Column. I do not want to have either the question over my head, or a another missed opportunity to contend with. The opposite side of the coin is the most difficult to grapple with; if the treatment works, I may require it for the rest of my life.

Damn.

When Even Blinking Hurts...

August 26

These photos were taken one day apart. They show the discoid lesions that develop in the corners of my eyes when I am in a flare and I make the grave mistake of blinking too hard or too often.

I am in a flare right now. The new doctor I saw yesterday suggested I go to the Mayo Clinic for treatment as soon as possible. Today I have been on the phone nonstop trying to consult with a rheumatologists that offer IVIg therapy. I have promising leads in Minnesota, San Francisco, and in several states on the East Coast.

I am tired though in more way than one tonight...

H8

August 24

Last week, I came across the term "H8" on an old friend's Facebook page. This friend of mine is openly gay and legally married to his partner of 13 years. For someone fairly educated, I am woefully uninformed. I had a vague understanding of what Prop 8 was but again the mixed blessing of insomnia gave me the opportunity to investigate further. I shook my head, thinking how sad it is that people suffer discrimination of any kind. Within the same week, I felt myself become painfully more aware of the concepts of victimization and discrimination.

I had scheduled an appointment to see the supervising physician at the local clinic I had been going to. I had hoped he might assist me in beginning the process to obtain authorization for the UVA1 treatments and IVIg therapy that I am seeking. Never in my wildest imagination would I dream that I would have the unfortunate experience of having a doctor unceremoniously decline to meet me for an initial consultation. The day before the appointment, I received a call saying this doctor whom I have never met was referring me directly to an internist.

How is this possible? Why? Is this a new millennium form of discrimination? Or is it an old form that I just never saw clearly?

He has seen a file that has a basic medical history and my recent visits to the clinic for an ear infection. I thought I might encounter a little resistance in bringing him on board as one of my medical team members as he is not an Internist or Rheumatologist, but I thought I might make my case and see what we could agree on. The doctor chose to cancel my appointment and send me elsewhere.

Is this what the medical profession has come to? "You're complicated so I don't want to bother with you"?!? I fully realize that there may be a lack of knowledge or experience at play here inspiring the reluctance to treat me, but my case has historically been no better even when I was seeing "experienced", "top doctors" who literally wrote the books on lupus. I don't expect doctors to know everything, or even anything per se; I actually expect very little from a doctor except compassion and understanding. I got neither. I told the receptionist that unless he was refusing to see me, I was going to show up for that appointment. I also promptly reported this situation to my insurance company.

I see meeting a new doctor as an opportunity to share information. If this doctor feels my case is beyond his scope of knowledge or abilities, wouldn't the opportunity to meet someone with a unique case and a very unique set of treatments be at least of some medical curiosity? Couldn't he see this as a chance to further his base of knowledge? Apparently not.

I will not stand for being treated like just a piece of paper, a set of numbers on a lab test report, a file to be shuffled from his desk to another.

I kept the appointment. His assistant ushered me into an office and explained first gently, then repeatedly in exasperated tones that the doctor is on staff at the clinic as an OB/GYN and only sees pregnant women every two weeks. I explained to her that if that was the case he needs to inform the insurance company because they have him listed as a family practitioner and formerly, they had no problem adding me to his schedule and they never asked if I was pregnant. My PA had advised me that she had already discussed the case with this doctor and that he insisted upon sending me to an internist and that he saw no point in meeting with me in person. I have no problem being sent to a larger town, a bigger clinic, a more experienced doctor or a different specialty. I do have a problem with this being done without the courtesy of a discussion or without my mutual consent.

After I made it clear to the doctor's assistant that I would be keeping this appointment unless the doctor was outright refusing to see me, she said she would discuss it with the doctor and return shortly. She did return and ushered me to a conference room. The doctor returned with her a few minutes later and they both sat down at the table.

I explained to him that I had made this appointment to discuss my treatment plan to manage my SLE/RA. That I was aware that he was not a specialist but two years ago, I had already been through the system "down the hill"; after being in the ER, then sent to specialists, I was eventually sent back to the East coast because no one could figure out what to do with me. I lived in New York then so I could go "home", but I live here now and this is home. Where do you go if you can't go home?

I presented the doctor with my view on the matter, telling him that I simply wanted him to look at the information I had and make a decision about proceeding with my care after hearing the facts. He declined to look at my information, studies and abstracts of clinical trials that proved the efficacy and safety of my treatment choices. I posed a question to him; why would he feel it is appropriate to sign off on a smoking cessation drug that had potential psychiatric side effects in a patient that had a history of anxiety? Why would he further sign off on two migraine medicines that have devastating side effects for the kidneys, but he refused to even look at a treatment that is essentially a low dose tanning booth? He declined to comment.

When I realized that there would be no swaying his opinion, I told him that I appreciated him giving me a chance to discuss the matter, and the fact that he had originally refused to do so was my biggest concern. I told him that refusing to see a patient and referring them elsewhere without taking the time to even meet the patient was inappropriate and offensive. He apologized.

I have never considered myself a "victim" of lupus, RA, or MCTD; I have considered these personal challenges which I do my best to overcome. I didn't think I would ever feel like a victim of discrimination in the medical field because I have a difficult diagnosis. I now know that one can be deeply affected by the pre-judgements of others and the frustration that occurs who you challenge the system and you are met with a brick wall.

I intend to pursue the matter because I believe I was singled out in an unfair manner. The doctor even went as far to say I can no longer see the PA that I was working with because he has to sign off on all of her cases. Must I seek a big city clinical out for a hang nail because I have lupus? He seems to think so. I am not sure of my course of action with this situation and I have reached out to The Lupus Foundation for advice. It occurred to me to seek them out for help because I am fairly certain this cannot be a first in a small town setting. I would like however, for it to be the last.

Quitters, Losers, and Fighters

August 18

This is my second day taking a smoking cessation medication. I'm a little nervous after reading more forums from others that had used the same drug; it seems that there is a fairly high incidence of mental disturbances that may be a side effect of this drug. Most complained of irritability, anger, depression, etc. but it occurs to me that the people making these statements also admit that they were smokers for 20-30 years and smoked 2-3 packs a day. I think that anyone that seriously and long-term addicted quitting in less than a week would make one a little depressed or irritable to say the least. The forums did reveal that the drug is exceptionally effective in assisting the smoker in quitting. There were no incidences of relapses that I could find. I cross my fingers and take the second dose today.

I have been working with my insurance company on getting at least one of two types of treatments approved. I am pursuing phototherapy with a UVA1 device, and IVIg plasma therapy. The phototherapy unit costs $2151 delivered. The IVIg therapy costs about $10,000 per cycle, with one cycle a month for a minimum of six months. Most patients have 8-10 treatments with IVIg the first year. The insurance company will pay for the IVIg therapy because they have deemed it appropriate and effective for refractive cases that have failed at all prior treatments. There are many clinical trials and medical journal references to support the fact that phototherapy can be effective for treating SLE and RA. What is so unfathomable is that the insurance company will not pay for phototherapy units as DME but they will pay upwards of $80,000 in one year for the alternative!?!

I called them to discuss this. Their representative stated that she agreed with my questioning this policy and that there may be a way around the system automatically denying the claim. First, I have to have my doctor pre-certify the treatment or device. When it is denied (which it will be based on their policies) I can write an appeal. I will submit my medical records supporting that all prior treatments have failed or have been intolerable due to side effects, also copies of the studies I have gathered from the Oxford, Rheumatology, and JAMA journal that support the efficacy of the treatment. The final key is to state that should they deny paying for the DME unit, I will proceed directly with IVIg therapy and the insurance company will be forced to pay a minimum of $80,000 for one year as opposed to the potential to pay $2151 for the phototherapy unit which has a three year warranty. The appeal is reviewed by a medical panel of actual human beings and so the representative believes that they will see the infinite wisdom of trying the less expensive route first.

I will begin this process on Thursday with a visit to my doctor where I will obtain the proper prescriptions and have him begin the pre-certification process. I expect with the back and forth of denial, appeal, and answers that this should take two to four weeks to resolve.

In the meanwhile I'm going to practice being a good quitter with my smoking cessation attempts. I would like to lose, not gain weight as a result of quitting smoking so this is also the first day for my gentle workout on DVD.

I will also keep fighting for treatments that do more good than harm.

Smoke and Seizures

August 15

If you've ever visited a port or warehouse where they have those signs that say, "It has been X amount of days since our last accident." This is supposedly to keep the workers aware of safety maeasures and have them shoot for the highest number possible, without resetting by having an "event". I'm going to get on eBay and find myself one of those signs. I'll use it as following: "it has been X days since my last seizure/syncopal episode". When I hit the 1,000 day mark, I'll change it to my new goal: "it had been X days that I have been pain free."

I was hoping my session with the Energy Worker would have garnered more instantaneous results with regard to my migraines and my back. I am still reeling a bit from the many thoughts and ideas I had in meeting with her. One idea we discussed was the notion that I "self-sabotage". Sitting next to my ashtray, I cannot deny the overt signs that this is true on some level. It's true on many other levels as well and I'm in the process of digging deeper to find out how and why I stand in the way of my own success - health wise, emotionally, or otherwise. She is the third person within one week to suggest that I think about quitting smoking. I have a thing about threes. I have already filled the prescription for Chantix, but had not yet picked it up. Cold turkey can slide off your plate, the patch is too easy to peel off, the gum too easy to spit out. Chantix can make you feel ill if you smoke while taking it so it seems the best way for me to quit and mean it.

Energy Work

August 14

Last night I had a seizure. The migraine had been with me since the day before, coming and going like tsunami waves. The Energy Worker had come to my home and had done muscle testing, a very interesting Q and A, and administered a blend of oils with frankincense, eucalyptus, clove, and cinnamon. She laid hands on my head and the pain lifted somewhat. It came and went in intensity during her visit and we tried the oils again. She advised me to drink plenty of water and was off on her way.

I drank plenty of water but the pain would not ebb, so I decided to take a nap. When I woke up, it was still there throbbing and pounding away. My emergency stash of Amerge and Fioricet was my reluctant choice to bring things back to an even keel. Two hours later things were better and I as I sat talking to Phill, I could feel the eerie sensation of a seizure begin to wash over me. I hadn't had one in months so I tried to dismiss it as fatigue but the feeling became stronger and I felt my chin drop as my eyes began to roll in my head. My form of "seizure" for lack of a better word is very unusual as far as petit mals are defined. In the midst of one of these "events", I often cannot speak and if I can, my speech becomes slurred or stuttered. A word can get "stuck" for seconds to minutes if I attempt an entire sentence. I often have muscle twitches or spasms throughout all or parts of my body. I can seem unconscious and be totally unresponsive but strangely, I can always hear.

This episode lated about 30 full minutes. When it passed, I carried on as I usually do. Since I had slept through supper time, I prepared a snack of hummus, steamed spinach, nan tandoori bread, and a small piece of sheep's milk cheese. I felt a little better after eating but still somewhat exhausted so I turned in for the night. Sleep came unusually easy and I got 6 hours of deep sleep.

This morning I felt no after effects. I woke up feeling rested, joints still doing their morning stiffness thing, but no headache and no fever. Today is the opening of our new Physical Therapy Clinic and Pharmacy. I went down to introduce myself and meet the staff, all of which happen to be family and long standing member of our small community. The welcomed me heartily with smiles, handshakes, and hugs. After a little discussion about my health status and telling them a bit about our new Wellness Group, they eagerly accepted my request for them to post the notice for our meeting and give my business card to those clients and friends they thought might be interested in attending.

I had been given a script for physical therapy yesterday by my doctor. She agreed it might be beneficial in helping with my back pain. I was advised that they are fairly certain that they are in my insurance network and I made an appointment for this coming Tuesday for an evaluation with one of their therapists.

The headache has returned this afternoon. I often type in fits and starts throughout the day. It crept in about 4:30p; they usually show up like uninvited, unwanted guests, somewhere between noon and early evening. A nap from 5-7:00pm did help. Or was it the acetaminophen and ibuprophen before the nap that helped? OTC's are my dirty little secret. My guilty pleasure that helps me walk the fine line between functional and whatever I am when the diseases decide they don't want to play nice. Today I decided that it was more important to spend a nice evening with Phill than to be holed up in a dark room with a buckwheat hull ice pack and holding my own blasting head.

There is an idea that because those of us with chronic illness experience an inordinate amount of pain on a daily basis, that we adjust or scales to fit the intensity of the pain we have to deal with. I am trying to mentally wipe the slate clean on my Costco sized scale and get back to one that any average Jane or Joe without health issues would use. That way, I feel that I can get a better grip on how to manage pain or other symptoms in a more realistic and healthier way. And not feel guilty about doing so in the process.

There are many days I get away with keeping the status quo without consulting a pill bottle. The days I have to give in in order to maintain some basic functionality (i.e. getting myself off the toilet on my own) and those days make me feel somewhat like a failure. I feel like I have "outed" myself as a med-free lupus survivor and that any pills, OTC or Rx, that I need to take to get me through the day is a day I have failed my health and myself in some small way. I am trying to come to grips with the fact that a diabetic would do the best they can with diet and exercise yet might still need insulin to prevent catastrophic events from occurring. I would never advise a friend or family member to be as hard on themself as I am on myself. The constant battle to keep myself health and active is a balancing act that I'm still struggling to master.

Missed Opportunities

August 13

Brain fog and a migraine are a bad combo. I had my appointment set for more than a week with the Energy Worker for this afternoon. I was so looking forward to it since not only had my herniated disks experienced a relapse, but I was dealing with a migraine today that would not quit,. Even with my surrendering to not only OTC medications, and the prescription drugs that used to help, I could not get any relief from the pounding and nausea.

About 2:00pm the headache became so intense that I simply had to lay down. I closed my eyes and the next thing I knew it was 5:00pm. My appointment time had come and gone. I had missed it. She had called twice and I had slept right through it. I picked up the phone and dialed her number immediately, not knowing anything to say other than my apologies and to tell her what happened. She was very understanding and had guessed maybe I wasn't home so she had not driven the entire hour it takes to get to our little town. I was relieved. I was even more relieved when she offered to come up tomorrow.

One door closes, another opens.

Treatment Options

August 12 - Afternoon

Suffice to say, life is never dull with Lupus. On the agenda today was a screening with an audiologist followed by an appointment with an ENT specialist to check the still unresolved problems with my ears. The hearing test showed that although my eardrums were feeling quite full, my hearing was still functioning on a relatively normal level. The test to measure pressure and flexibility in the eardrums was a flatline. My doctor did a few more diagnostic procedures and then discussed the options. I could have ear tubes implanted during today's office visit but that is not without risk; the tubes would eventually fall out and leave a permanent hole in my eardrum. That hole might require additional surgery and would leave me vulnerable to possible infection. The chance of significant improvement with the tubes inserted was about 50/50.

We discussed the option of "wait and see". This seemed like the most prudent since 50/50 is not great odds and the chances of it improving in its own in time was about equal. I appreciated the doctor's candor and full disclosure, his giving me as much information possible so I could make and informed decision. I left with my semi-stopped up ears intact.

On the way home, Phill and I stopped at a different grocery store in town. It had a reputation for being Utah's answer to "WholePaycheck". It didn't disappoint: I found my Manouri (sheep's milk cheese), maitake and shiitake mushrooms, organic spinach, and Hanson's Natural Soda. A few bags and a few bills later we were on our way to get a burger and sundae, sitting in the parking lot chowing down while discussing my other latest health dilemma.

My second round of blood work came back with some good news, some not so good. Bad news first: my marker for Mixed Connective Tissue disease was more than double the range for "high". My RA factor was also more than double. This concerned my doctor because also she has RA and she is on infusion medication to control her disease. She was not sure how to tamp the current flames but honor my wishes to remain med-free. I've said before that I question that decision about meds on a daily basis and on that last visit, I gave her the o.k. to do the pre-authorization for a second course of the chemotheraphy drug, Rituxan.

I went home and scoured my records for clues to this puzzle. It seemed that my RA factor has swayed between a low of 23 and a high of 35 over the past six years. During the low points, I was taking some form of corticosteriod immune suppressant, an antimalarial, low dose oral chemotherapy, and a variety of pain medications and anti-inflammatory drugs. There seemed to be little way to tell which one might have helped since they were all in play at the same time in one way or another. When the numbers were high, I was on basically the same regimen. One thing that stuck out is that my RNP factor for Mixed Connective Tissue Disease had been negative in 2003, then jumped, and has remained off the charts since. Out of these tools in my prescription medication toolbox, which one should I turn to for help this time? Rituxan seemed to be the biggest gun in my arsenal and the only one that I seemed to have garnered some long lasting effects from with little side effects.

Digging deeper, I found this wasn't necessarily so. In 2006 into 2007, I had been suffering with two herniated, torn, bulging disks in my lower back for about six months prior to this treatment and after the treatment my back pain became much worse. Trigger point injections and epidurals did not help, nor did regular visits with a chiropractor that had known me for years. It eventually got better but the point is that during this time when my body was exposed to this very strong drug, things became worse - much worse. My migraine headaches became chronic and intractable even with daily treatment with a cocktail of four drugs that had sinister side effects. I was then hospitalized at the three month mark post treatment with a severe respiratory condition, and remained in the hospital for twelve days. When I was released I was in worse shape than when I arrived. I had gained 17 pounds in less than two weeks while on high dose IV steroids and I was weaker than I could ever remember. Could this chemo treatment have made things better or worse - or both?

I kept reading on until the 5-6 month mark but here is where the records ended. Somewhere in that 5-6th month, I had been to a health retreat her in Utah and I had gone back to New York to dump all my meds except the prednisone which I took a full year to taper off of. I stopped going to the doctor and started going for walks. It was extremely difficult in the beginning when I could barely walk about 15 feet and then needed to rest. Over several months, I could do a mile, then two, then up to eight miles in a single day. I climbed to the top of Angel's Landing in Zion National Park three times that summer, hiking a mile high, and scaling across a 3 foot wide section of trail affectionately known as "The Razor Back", with more than a 1,000 feet to tumble down on either side. I challenged my body and my fears and I seemed to be winning. Then things eventually started to fall apart again. But why?

There is the question of whether I initially experienced some negative side effects from the treatment but possibly the longer lasting effects of treatment could in whole or in part be responsible for my short lived, but sweet remission. There are the other factors of better nutrition, exercise, and stabilizing my own internal systems by reducing my toxic load from intake of prescription medications. Like a Rubik's Cube, there are many twists and turns involved before you can ever hope to find the answer.

Phill and I talked today for some time and came to some difficult conclusions. When I first started coming to Utah, I was on the Anti Inflammation Diet (Jessica Black, N.D.) and I never, ever cheated, not a single bite! I was the queen of quinoa, the demi-goddess of leafy greens. I had just gotten off almost all of my meds, I was exercising, breathing clean air in a beautiful, stress free place. I felt so good here and it contrasted greatly with how I felt when I returned to New York which was my "kryptonite". I felt ill and weak again in New York and months later I divorced my husband of 16 years. There were other factors involved in the breakup of my marriage but I will say that my health played a critical role. Leaving my 12 and 15 year old children to finish school there was the hardest part and had me nearly suicidal at one point. I had spent nearly every minute of there lives with them up until this point and now I had to choose. There are still no easy answers there but the fact I am in Utah and they are not, speaks volumes.

In October of 2008 when I moved to our small town with Phill, I left behind my special place, Zion National Park. I left my new friends, friendly acquaintances, a manageable part time job, and everything I had built since leaving NY. I thought I was an expert by now in these little earthquakes in my life but since last fall the aftershocks kept coming, day after day, month after month. I slowly became more sedentary, more cloistered to the point I started having panic attacks again and was nearly housebound. It came around again to the point where I was eating bologna sandwiches, hot pockets, soda by the liter, and ice cream as my staple diet. My weight did not balloon as it usually did when I was on prenisone, so without an obvious, undeniable physical sign in the mirror, I didn't notice the other outward and obvious signs that I was heading for trouble. I didn't realize for quite some time what great harm I was doing myself. Talking openly and honestly with my partner was instrumental in turning things right round.

I recently started eating better again, and it surprised me how easy it was to get that one aspect back on track. I had already tweaked many inflammation-free recipes to my liking and now it was just a matter of using a book instead of writing one. I went one step further and became very focused on supplements, seeking out ones that have the same basic function as some of my old meds. I have started taking 5HTP for migraines, and eating the best tuna or salmon to balance my HDL levels. I sought help for "little" things like my ear and visited a clinic that is an 1/8th of a mile for my house; there I have since met some of the kindest, best people in the medical profession. I met a kindred soul in my doctor, since she struggles with RA as I do and understands my decision making process in a way most doctors don't or can't. I am taking better care of myself. I've resumed making proactive decisions, not knee-jerk reactions to my health crises, as I used to do. I have found old and new means to be my own best advocate. Yet still I had my doctor order the chemo at our last visit.

Authorizing it and administering it are two different things. When I was first given this drug, I had last rights in case I was part of the unlucky 4% that reportedly died of infusion reactions. Yesterday, when I visited the website of the drug company again, the number of fatalities now stated less than or equal to 25%.

Today, if someone told me there was a gun to my head with three magic bullets that could help me and one that could kill me, would I spin the chamber and cock the hammer? For me, the answer is no, still no. There is one benefit of sifting through a 700 page file that covers less than 10 years and finding what I have always known -

There is no magic bullet, there is no cure.

There are ways however for me to effect positive changes that have dramatically improved my life and my health. How I let myself loose sight of this so slowly and easily is probably best explained by the fact that with the exception of the summer of 2007, I cannot remember being well at any age before six years old. I remember learning how to ride a two-wheeler in my driveway with my Dad. I do not remember feeling pain, except when as all children do when I fell off the bike. Being responsible for my health is new territory for me and sometimes I get lost. Again, foreign land, no maps, and I don't speak the language very well - yet. I am learning and doing so quickly I think.

On Friday, I will use my hour with my doctor to create a wellness plan. I'll discuss dietary changes still necessary, an exercise regime that is safe (walking most likely), and whatever supplements we agree that are currently missing. I am also going to cancel the chemo.

I was contacted today by the Lupus Foundation of America; they have asked and added my blog to their list of "Lupus Blogs We Read" on their website. I am pleased and proud to be part of their efforts to reach out to those that deal with Chronic Illness and their search for a cure.

August 12: Urgent/Please Read This...

I am pleased to pass along this information provided by The Lupus Foundation of America:

Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to http://capwiz.com/lfa/home/

Click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please pass this along via your blog, and to all your contacts.

Wellness

August 9

It has been a busy week to say the least. Flyers for the Wellness Group have already been placed at the local clinic and at the post office. The remaining ones were printed yesterday and will go to local businesses tomorrow and to our new pharmacy and physical therapy clinic when they open on August 15th. I also received a shipment from an eco-responsible tuna company with free product and literature to support the efforts of the group. I am very grateful for their support.

In other support, I had an offer from a designer to build our wellness group a website; she says she will do so for free in order to build her portfolio. I am hoping this works out because it would be very convenient to have an internet presence where members can ask about specific dates/times for subsequent meetings, check in on other members, post links to favorite sites, ask for information or help, etc. I'll be in contact with her early this week to see if it will pan out.

Meanwhile, my first set of blood work came back with some old "new" news; my lupus and RA are both active and present - no big surprises there. My HDL cholesterol levels are way too low so I have upped the Omega 3 supplement, increased my intake of cranberry juice and I'm enjoying a square of dark chocolate daily. My eardrums are still rigid and filled with fluid so I have a last ditch re-check on Tuesday but I scheduled surgery for Wednesday, anticipating that there will still be no change. It's a relatively minor procedure to have tubes inserted in my ears but it should help me regain full hearing and prevent future buildup of fluid.

I realized at my follow-up appointment that I had neglected to ask for 14 of the "regular" tests that are usually done by a rheumatologist to track my flares. I had originally gone in a a day when I had a migraine and could only remember eight of the tests. On the next visit, I prepared a page in my notebook the night before with all the tests, lists of symptoms and questions, and put all my supplements in a bag so they could be noted on my chart as some like Zyflamend have proprietary combinations and I could not photocopy the contents of a round bottle. The notebook came in very handy the next day as I checked off things I had wanted to discuss and now I didn't have to rely on my oft-fogged brain to strain to remember.

One of the tasks in my notebook was to call my health insurance company. I had a difficult time with them on the phone this week, trying to get them to authorize payment of my Alpa-Stim 100 as DME. They also gave me a hard time about filling my prescription for Amerge (migraine medicine) and I had a very helpful member services representative who discovered that because I am now on COBRA, my old and new file are not linked; this was why the former authorization for 18 pills was not applied. He took my appeal and said it should be processed quickly and I'll get the 18 pills as prescribed in due course.

Yesterday I had a relapse of my issues with a ruptured L5 and S1 in my lower back. This problem presented itself in the summer of 2006 and was not relieved until I saw an Energy Worker in April of 2007. I had tried trigger point injections, epidurals, and had 27 visits in a row with my chiropractor who had known me for seven years. Nothing worked at the time and I was told I needed surgery.

I knew nothing about Energy Work, and to tell the truth, I still don't - except that my back was healed. Two years is a good run to be pain free in an area that is extremely vulnerable and very difficult to treat in a non-invasive manner. By glorious coincidence, I had already scheduled a visit with an Energy Worker for this Thursday. While I wait for the visit, today I found that the less I focused I the pain, the less it troubled me. Yes, it still felt like lightening shooting both into and out of my back at times, but there were moments of calm. I have Bella to thank for some of the distraction. My two puppies has become three puppies. The parents of my one year old long haired mini dachshund mixed with toy poodle had another litter in late May. I wasn't expecting to get another dog, or at least not yet. Long story short, we have a new four pound furry friend in the house. A welcome distraction indeed.

Hopefully not too distracting as a busy week still lies ahead. The flyers will be out in full force so I'm hopeful I'll get a few calls to add to our current list of 6-8 potential members. The very idea of this group has already had a positive impact on me; I am being more assertive, social, organized and goal oriented. I am finding that my experience with SLE, Lupus, and my host of other maladies has given me opportunities to know people I might otherwise have not met. It has given me the opportunity to learn from my experiences as well as share and teach. Twice in the same week, I had two different doctors tell me that I was able to teach them things they had not come across in their studies or prior experiences. Hopefully that hard gained knowledge will go further out into the world now so it may affect some positive change in somebody else's life.

Pregnancy and SLE

August 3

My daughter starts interning at a theatre camp today. She's been a camper there for years and this is her first year as a "teacher". She's going to turn 18 years old on Thursday and will be off to Dartmouth College on nearly full scholarship in the fall. Of course I am proud of her, and equally proud of my 15 year old son who follows closely in her academically talented footsteps. When I think that I gave birth to a tiny five pound four ounce premature fragile little bundle that is now driving and sipping Starbucks Frappuchinos, it's nothing short of a miracle. You would think in reading most of the books on Lupus that is's not only a miracle, that is impossible. Very possible, I tell you, not easy but possible.

When I was in my last semester of college due to graduate with a degree in Elementary Education, I was very close to achieving my dreams. I had always loved and wanted to work with children and now I was close to finishing my degree in four years flat while working mostly full time for a family business. I had even been hired to work after graduating at a private school in Brooklyn, New York, teaching science and art to third graders. That winter I had been very sick so it was a relief that I was near the finish line. I had been dealing with chronic illness for about eight years by this time, but diagnosed with SLE for only three years. The disease was constantly throwing curve balls at me with new and scary symptoms. In my freshman year, I started having "syncopal episodes"; at the end of class one day and stood up to leave and everything went wobbly, then black. I could hear myself hit the floor and people rushing over but I could not move or speak for several moments. Is this what it's like to faint? Strange, I thought because I could still hear, not completely unconscious.

This continued off and on for the next few years but didn't really phase me as I didn't really know what to expect from Lupus so new symptoms didn't really frighten me. I travelled to Europe for summer studies. I drove without thinking twice. It didn't occur to me until years later that these were things I should, and later would be afraid of. But more on that another time.

I was having a really hard winter in my senior year of college. In December, about a week before Christmas, I wound up with what I thought was the flu. 104 degree temperature, chills, all over body pain. It lasted for days and when my parents realized it was getting worse, they took me to the hospital. As I sat in the waiting room waiting for triage, I was slumped in my chair exhausted by the effort to sit. I raised my hand to my forehead which was burning with fever and when I took my arm off the wooden armrest, I noticed my mother's eyes following my arm to my head. Her stare turned from blankly curious to distinctly alarmed. I looked at my arm to see what had caught her attention. There, where my arm had been on the arm rest for maybe thirty minutes, was a perfect purple imprint of the wooden chair rail.

This sent alarm bells off in the E.R and I was attended to immediately. I was given a spinal tap to test for meningitis, too many vials to count were drawn for lab tests, x-rays, everybody rushing, puzzled, looking worried. Then we waited. Finally, many hours later, I was told it was my Lupus flaring and I was experiencing my first bout with Vasculitis. Anything my body touched caused the tiny vessels under my skin to break and before long I was one almost unrecognizable bruise. They treated me with massive amounts of I.V. steroids and within a week or so I was home from the hospital. I was kept on a fairly high dose of steroids for months after to keep my immune system quiet.

I was able to return to school and start the new and final semester. I experienced amenorreah, rapid pulse, anxiety, and weight gain of about four pounds from the steroids but this was all relatively normal and possibly even mild, considering the doses and variety of new medications I was being given. So, I pushed forward. By May, I was ready for final exams, and picking out Graduation outfits. I was also still ill and tired. I made an appointment to see my Rheumatologist and have some more tests done. The steroids were the likely culprit for why I was feeling like crap but I still felt something was wrong. The doctor humored me and ordered a battery of every test we both could think of, looking for the ghost in the machine. On May 26, we found it.

I was lying on a table in a room with a technician. The room was cool, dark, and quiet. For some reason I was more uneasy than usual during tests. Minutes seemed like hours. The quiet finally became overwhelming and I asked the tech, "so what is wrong with me?" I didn't really expect an answer since I knew they were supposed to tell you that the doctor would review the report and answer any questions. But he did answer me. He replied, "this may come as somewhat of a shock to you, but you are about six and a half months pregnant."

As my world as I knew it fell away from me in an instant, I was flooded with fear: I'm pregnant? But I'm SICK! But I can't be pregnant! But what about all the medications, the X-rays.... the BABY!?!

I was struck with a terror I didn't know could exist. What was going to happen now? Needless to say there was alot of quick work to be done. I contacted obstetricians, rheumatologists, and geneticists across the country to find out what harm I may have done this baby by not knowing I was pregnant and being on so many prescriptions at such high doses. No doctor was able to answer my questions as they simply had never dealt with so many variables as in this case. There wasn't much of a wait for an answer because she was born about ten weeks later.

This tiny girl appeared what we believe to be about 3-4 weeks early, was jaundiced, and in NICU for several days after her birth. Within days, her color eventually turned normal and she was growing, so she came home and we started a life. Just a few weeks into that little life, I noticed a bruise on her; it wasn't a "normal" bruise either. Horrified, grief-stricken, it dawned on me that it was a discoid lesion. I contacted the Hospital For Special Surgery in Manhattan and she was seen by one of their Pediatric Rheumatologists. She tested positive for SLE, specifically, Neonatal Lupus. The news was crushing but according to her doctor, not entirely without hope. There was a chance that she still carried elements of my blood and immune system in her tiny body and that once her own immune system was strong enough, it would kick in and she would be healthy. So we waited. And tested, and waited, and retested...and waited.

It took about nine months of waiting, right about the time her eyes turned from deep navy blue to brown and the bald patch on the back of her head was starting to grow back in. The doctor informed us her tests for Lupus were now consistently negative. She no longer bruised. She no longer had this dark cloud of a diagnosis over her little head. I must have breathed for the first time in over a year that day. I looked down at my healthy baby girl. In fact, I decided, she was the very picture of health; she was growing at a quick and robust rate. She a was happy, bubbly, and healthy baby. She is now a happy, bubbly, healthy 18 year old.

Still my baby though.....

Insomnia

August 2

After a particularly difficult night in the hours that crawled by between Thursday and Friday, I started to realize that I might have to go to the hospital. The headache had morphed into one of those migraines that you hear about in commercials; "if you are having an unusually painful headache or 'the worst headache of your life', you should seek a doctor immediately". Not only was the migraine off the charts, but I was dealing with joint pain, fever, dizzy spells and nausea so bad I could barely walk so I stood hunched over the sink in tears. After suffering dry heaves for almost a half hour, I was finally able to gather enough strength to make it 25 feet away to the bedroom to lay down.

Since I still could not sleep, I thought about my options. What it came down to was "this too shall pass", more so, Please, Please, let this pass! Just in case though, I thought it best to gather my medical record "brief", and locate my emergency suitcase. I used to have a little overnight bag packed with a few comfort essentials for emergencies: a simple shift dress with buttons down the front so I don't have to wear a hospital gown and they can wire me up at will to an I.V., a cushy bathrobe, toothbrush, and socks I can put on all by myself. When I was able to stand again, I sat at my desk, thinking of what information I might need. I realized I hadn't regrouped my medical records since I sorted them for the last trip to the hospital in February 2008 when I had pneumonia. I had sorted out the general patient background, labs, meds, and anything that had to do with asthma or lung related lupus flares. The E.R. docs found this very helpful; along with a knowledge/experience base they could see that I had, and the fact that I had a nebulizer at home, they told me that in my current state they would normally keep me for about ten days but they were going to let me go home. They gave me four different antibiotics, a pulse dose of steroids, and a script and set me on my merry hacking way.

So flash forward to present day, I sat at my desk at now 4:00am and pulled out the box which houses my basic medical records for the last six years. I never used to ask for copies of my records but I started to a little while back and this has been enormously helpful in many instances. I don't have documents from all the hospital visits, or the surgeries, but everything else from a medical center where I saw every other kind of specialist is included. The file covers 2002-2008 and is about 700 pages long. I started flipping pages and pulling out what I thought was generally relevant from my most recent onslaught of symptoms. After gathering about 30-40 pages, I started reading them. I found that what I am going through right now is nothing I haven't been through before: migraines that last days to weeks on end with no relief, insomnia, 10 out of 10 joint pain, fever, swelling, discoid lesions, fatigue. All described in glowing, terrible detail. I hit the pause button on my brain for a minute when it occurred to me a thought I dreaded even being vaguely aware of - the thought that in six years, not much has changed. Damn! I could save some poor resident in an E.R alot of reading with summing it up in one sentence: MEDICAL EQUIVALENT OF A TRAIN WRECK. I wonder what is the ICD-9 code is for that one?!

But, there was something different - this time, I was having alot of the same symptoms, but there was no long laundry list of meds to accompany them anymore.

I still do take OTC drugs to deal with some of these symptoms, but the former list was more than a dozen daily prescription meds, and three failed types of chemo. Hard to imagine, even for me at times, but her was the proof - things are better.

I decided do the thing that is for me, the very hardest thing - to be patient with what I was feeling physically and emotionally. I had some reason to believe now that things would turn themselves around given time. I have a favorite refridgerator magnet that says, "it will all be okay in the end. if it's not okay, it's not the end." Amen.

The weekend was a little better. My SO was home, and it was his birthday. I was excited about the small but special presents I'd been able to gather (thank you internet, thank you eBay, thank you expeditious shippers), and I was going to try grilling pizza on a baking stone in the outdoor grill so I wouldn't heat up the house. The pizza worked except the stone was too big and the part that stuck out eventually cracked and broke off. Lucky for me it broke in just the right shape to fit the grill now. BTW, the gluten free version turned out to be virtually inedible. I did load it up with anti-inflammatory, lupus/RA friendly veggies though.

Sleeping was a little easier and more comfortable part in parcel because I was able to get a ridiculously good deal on a honeycomb gel topper for my air-bed. I had recently tried one of those body scans at IntelliBed and discovered that their IntelliGel bed worked better than even the top of the line air beds or Tempurpedic beds at relieving my joint pressure and pain. It took dozens of calls and days to coordinate, but there was a manufacturer that had a topper that was cut to the wrong size and they would sell it for pennies on the dollar. It arrived on Friday and we set it up; The first night was very promising. Slept seven hours, and verrry comfortably! The next night it felt a little more "hammock like" and I needed to adjust the air-bed to make it a little more firm. This will probably happen on and off for the next three months as the gel material is designed to inherently soften up a little over time. I will say that the early review is that the gel surface greatly reduces pressure on my joints. Hopefully more good nights of sleep are ahead.