Ambien Hearing: A Fight for Something Bigger

I'm so chaotic in the head at the moment, I'm not sure I can form a coherent post. However, I want to try because the feelings are so raw NOW. I'm emotionally and physically exhausted from today's experience: another that is common in the world of chronic illness.

I honestly want to use the F-word and the A-word right now, but I realize this might offend a significant number of my subscribers, so I have said them out loud only to the walls of this house, my mother and Asher! (Yes, I can be a potty mouth at times, although I try not to be!)

Today I had a 'hearing' with an Administrative Law Judge through the Department of Public Welfare because I disagreed with the denial of a medication I take regularly, Ambien CR.

A quick catch up for those not familiar with the logistics of my situation. I receive Supplemental Security Income (SSI) and Medical Assistance (MA). I do not receive Social Security Disability (SSDI) and Medicare because I did not 'pay into the system' before I got sick.

I have been taking Ambien for eight years now (other than a few trials off of it to see if we could find a better substitute). I have worked with psychiatrists, psychiatric nurse practitioners, my primary care physician, and various specialists in ANS dysfunction and Chronic Fatigue Syndrome over the years and ALL have agreed that Ambien is the best available medication for me. We have continuously discussed the risks and benefits of using this medication long-term. At this point, given my health conditions, we are doing the best we can to treat both the symptoms and the underlying causes of my illness (probably Lyme disease). In my mind there is irrefutable evidence that Ambien is medically necessary.

However for more than a year and half, MA has refused to pay for Ambien or Ambien CR. They have continued to issue denials despite letters from my primary care doctor, my ANS specialist (who is one of the top ones in the country) and myself, documenting my need for this medication and the complicated aspects of my illness. At four bucks a pill this is a chunk of change.

My mom and I have invested endless hours into writing letters, finding research, listing all of the medications I have tried since becoming ill (over 60), etc. It is emotionally and physically exhausting. Both of my parents get the post-hearing crying and sadness.

I have continued to appeal the case over and over, and this was my second hearing, this time under a 'new claim'.

The hearing is set up as follows:

People present on the phone: myself, Administrative Law Judge, a consulting doctor (paid by MA--not a 'neutral' source).

Documents/Exhibits: letters from my ANS doc requesting Ambien CR and why; original clinic notes from appt. with ANS specialist; letter from myself explaining in detail why I need this drug, quoting research on sleep and ANS dysfunction, a list of all medications tried over the past nine years (including those MA considers 'substitutes), etc.; pages and pages explaining MA's formularies and rules for getting a medication; and my very favorite exhibit--a PubMed search done by the doctor for ambien/orthostatic intolerance and ambien/chronic fatigue syndrome showing that there are no clinical studies on these (duh!).

Hearing process:

1. Doctor gives his arguments. Goes document by document explaining why all of the information I have submitted is not valid. Explains how definitive his PubMed search has been and how thorough he has been. Explains over and over again that this drug is not medically necessary and I need a 'formal assessment of sleep hygiene'.

2. I am given time to give my 'counter arguments'. Please note that the doctor had all documents in his possession before the hearing and was able to form his arguments in advance. He talked for over 30 minutes, very quickly and in medical jargon. I scrambled to take notes and keep up.

I have no time to 'digest' or form my arguments. Must give them on the spot. I try to go back through document by document with counterpoints to everything that he has said. HOWEVER, when he gave his original arguments I was permitted to only listen. When I gave my counter arguments, he was permitted to counter argue each one. Note also that my counter arguments were often cut off by the Judge as 'irrelavent to the case' even though I was only going point by point on the same topics the doctor had addressed. So, her head was already filled with 'his information' but my 'facts and opinions' were not fully allowed as evidence.

3. Doctor gives his 'testimony'

4. I give my 'testimony' (I am NOT a lawyer and have no clue how to do this!)

5. I give closing arguments.

6. Doctor gets 'last words' and gives his closing arguments.

I am entitled to a fair hearing? If this is a fair hearing, this is a sad statement on our justice system (which, yes, I know is already screwed up).

7. We are now 'off-record' and doctor asks me in condescending tone if I would like a nurse case worker to 'help me' better understand things.

I realize that these people are paid to help me lose. The doctor was condescending, arrogant, rude and hostile.

A few 'highlights' from the hearing include (his idiotic statements are far too many to type out or make you read!):

He was quite proud of his PubMed search, which I noted, had he broadened his search to 'sleep' and these disorders he would have found literature. To this he, of course, became insulted and explained that he certainly had the skills to do a well-thought out search on PubMed. Even I learned in undergrad that you must try a zillion combinations when searching for something obscure.

He also had NOT read the clinic notes from my first visit with my ANS specialist. These documented my sleep habits, bedding, meditation practices, diet, exercise, etc. (all in his list of requirements for an assessment of sleep hygiene). After pointing these out, he admitted 'because he was under oath' that he had not read the letter in full before the hearing and that now that I made those points I 'probably' met 7/11 criteria for having been evaluated for sleep hygiene.

Please note that I have called MA, our local county assistance office, and other phone numbers multiple times over the past year requesting a definition of a 'formal assessment of sleep hygiene' and have never received an answer.

If, what they need to approve Ambien CR is, in fact, a documentation of sleep hygiene why can't they do one of the following: 1. Send me a form with the list of items/questions for my doctor to fill out and sign, or 2. Have the doctor on the telephone during the hearing process ask me right there the 11 points of sleep hygiene? (I am under oath) The questions are ridiculously simple and obvious--such as do you drink caffeine? Or alcohol? Or do you exercise right before bed? Do you do a quiet activity before bed? (The doctor finally 'revealed' to me what a definition of sleep hygiene actually was, after prompted by the Judge. He expressed disgust that not all doctors knew what the 11 points of sleep hygiene were. So, if it's so readily available and so publicized...well, don't make it so hard for your clients to get!

Aaaaah, but that would be way too simple and make way too much sense AND make it too easy to get Ambien, which they just don't want to pay for!

Most disturbing, and frankly sad, is that he dismissed all of the letters from my specialist. He kept referring to my 'alleged' diagnosis--as if it wasn't really confirmed or real. He also noted that since 2004 (the original clinic notes) and 2007 (a specific letter from my ANS specialist requesting Ambien) 'suddenly the perceived diagnosis had changed, as if I could not have evolving medical issues or newly discovered conditions in addition to ANS dysfunction and CFS.

He kept telling me that I needed to see a sleep specialist to determine the underlying cause of my sleep problems. I tried multiple times to explain that my illnesses ARE the cause of my sleep problems. This is well-documented. If I went to a sleep specialist he would not know diddly-squat about ANS disorders (as I am sure this doctor did not either).

Both this doctor and last year's doctor seem convinced that all chronic sleep problems are a manifestation of depression. Why then is there not a parallel here? Sleep problems are a manifestation of Lyme, CFS and ANS disorders.

Why does a doctor who does not know my case and who does not know the complexities of this illness get to trump the requests of my treating physicians? Why does he trump the experts? How does he get to dismiss every letter as 'circular reasoning' or 'historic' or 'not relevant' or only 'somewhat relevant'?

My doctors are the best of the best. Wouldn't they send me to a sleep specialist if they felt I needed it? Wouldn't they stop prescribing Ambien if it weren't medically necessary? And haven't we, by now, discussed the ins and outs of sleep hygiene enough? I can practice good sleep hygiene from now until the cows come home and it ain't gonna give me a good night's sleep. I still do it, but it's just not that simple doc.

I'm an optimist. But, I will lose this case. The nuances in the law make it so that, although the Administrative Law Judge seemed sympathetic to my case, she cannot approve this medication.

I continue to fight because I can. But I'm growing incredibly weary of fighting for this one medication when I have bigger battles to fight.



I fight for those who cannot fight.


I fight for those who are not as fortunate as I am.


If we have to, my parents can pay for this medication. However, they already pay not only all of my living expenses but for countless things already uncovered by MA--compression garments which go for a hefty price, and trips to specialists out of state, which MA does not pay for, etc.
Without these specialists I would not be anywhere on the path towards healing.


I also fight because I have the resources and the education to fight. If we are being honest, the majority of people on medical assistance are poor and uneducated. I have a solid college education, but no higher education. Still, I can navigate through medical jargon fairly well and articulate my condition well.


The papers that arrive regarding the hearings and denials and appeals are in such legal jargon that even my parents, who both have PhDs, cannot make sense of them. What does a person with little to no education and no money do in such a situation? MA does not pay for medical records that you might need for a hearing. Nor do they pay if you choose to take your case to the commonwealth court.


I'm fighting more than just my own fight. I'm fighting for those who desperately need medications and cannot get them no matter what. I can still sleep at night because someone in my family can pay for a the medication I need to help me sleep.


The entire process is a sad statement on the state of health care and how we treat people with disabilities. I wish I could remember which president said it and how he phrased it, but basically, he felt that a society's strength was based on how well it treated those who needed help the most, particularly those with disabilities. Oh how we are failing.


Right now on capitol hill, former employees of insurance companies are testifying about how, in order to keep their jobs, they had to deny life-saving medications and medical procedures. This made them absolutely heartsick.


Before the hearing I consulted my dad (wannabe lawyer) and asked him how to approach the hearing. He said the best thing I could do was cry and pull out the emotional stuff! I didn't need to fake this. After being sufficiently attacked by the doctor's initial statements, I cried through the rest of my arguments and testimony. And the rest of the afternoon.


I want to not care. I want to stay emotionally detached. But it is impossible when I listen to a doctor talk about me in the ways this doctor did.


Today I 'learned' that after all these years, and all these doctors, and all of these medications I have tried Ambien is not medically necessary and I need a formal assessment of sleep hygiene (just in case you or I missed those specifics repeated five hundred times in the one hour and thirty minute hearing). Still, even after a day of feeling heartsick--and enough stress to set off an ANS 'storm' as a fellow DINET member calls it--I'm one of the lucky ones. I can still take an Ambien tonight and pray for sleep to come. And I'll still be able to get more of those little blue pills even if MA denies me again and again and again.


For those who aren't so fortunate, may a day soon come when you receive what is just and fair and right for your illness. For the doctors who care for us, may a day soon come when your opinions trump the insurance companies. And may the day come when YOU choose what is best for YOUR patients. Most of all, may the day soon come when NO one goes without health care, vital medical procedures, and medications.


And for all of us, may a day soon come when we treat people with disabilities like HUMAN BEINGS.


Blessings,


Emily


Subscribers reading in email, link to blog provided here: http://www.adancinglight.blogspot.com/

A 'Vantastick' Close to My Davidson Summer

I can't believe almost a month has passed since Carrie and Sam were here for a whirlwind visit from June 24Th to June 25Th (I think they were here just over 24 hours, but we sure packed in a LOT during that visit!)



What a VANTASTICK conclusion to my Davidson summer! (Vantastick is a play off of their last name, so they call themselves the Vantasticks--which, they are of course, fantastic!). The visit, again, exceeded any expectations I could have had (I have learned from my great spiritual teacher, Maxine, not to 'set expectations' anymore because this way I am not disappointed if it doesn't turn out the way I 'expected').



First, when they left I felt so emotionally and spiritually full. Second, I was able to pack in an unbelievable amount of visiting time that I could not have done even a few months ago. We stayed up until 11:30--at which point Carrie was the one falling asleep! I was in high gear because my ANS was keeping me awake with shakes and sweats, but I was still trooping along. Carrie has visited me many, many times since I have been sick (I've been soooo spoiled by this), so she has seen the absolute worst and everything in between. She even observed how joyful she felt over the difference in how I fared during their visit this year as compared to this time last year when they visited.



Upon arrival Carrie and Sam promptly settled into their B and B room for a nap. When I woke up at my usual 1:00 pm time, they were still sleeping. Carrie had pushed to get on the road early in the morning so that she wouldn't miss a moment of my awake time. My mom said, "They're still sleeping." and I said, "Wake them up!!!". So, I knocked on the wall between our two rooms and Carrie came right into my room.

She immediately crawled right next to me on the bed and we hugged, stroked each other's hair, and just enjoyed being in one another's presence. We immediately connected and fell right back into being together. The whole visit felt this amazingly intimate, wonderful and affirming.

I've only known Sam a short time--as this was only my second visit with him--but he too is the easiest and most pleasant person to have around. As you can see above, Carrie and Sam were 'in charge' of dinner. Mom had made Paella in advance, but Carrie and Sam made salad, and got everything else set up for dinner. They even load and unload the dishwasher when they are here!

During her visits, Carrie has always seamlessly adapted and accommodated to my schedule, willingly done any household chores, or taken care of anything I needed done without complaint and without ever seeming as if it is in any way a burden. The first time I met Sam, the two of them came into my bedroom where I was resting, and sat right down next to the bed (me in PJs, with morning breath and looking perfectly ghastly!) as if it was perfectly normal for them both. I really think being able to do this for a sick friend is such an incredible art on their part, and such a wonderful gift to receive.

We filled our whole day with real and genuine conversations. I was still in a not-so-great place emotionally and spiritually (still reeling from that 'ol anniversary) when they were here. Both listened to me so carefully and helped me process. I was still struggling with the issues I raised with Angela, and how to take back control of my life.

I'm typically not super comfortable around men, but Sam makes it a breeze. He also helps bring in a different perspective. I struggle a lot wondering if I did feel well enough to date or marry if anyone would see who I am other than this illness. My girlfriends can tell me from now until the cows come home that they believe in me and that someone will love me for who I am--but it does help to have someone like Sam (who is a great guy and the husband of my best friend from college) give his two cents. He reminds me that great guys are out there, and so are great marriages--and I'll just be counting on Sam and Carrie as my matchmakers when the time is right! Okay, now, girls, your opinions DO matter and Sam's doesn't trump all your kind words! :)

Sam and Carrie have had a whirlwind year so we had a lot of catching up to do, as Carrie and I have not had a lot of our usual 'phone time' since she graduated from her MFA program at Yale, they got married, moved to a new city, and started new jobs all at the same time! For me, it's been a hard adjustment getting used to the decreased frequency of our long phone calls and emails. With each friend that starts a career or gets married or adds a child (or another child) to their family, the ability to keep in touch is naturally and realistically altered. With each friend, I struggle to find where I fit into her life and how to best be a friend without being a burden.

Carrie and I have reached a maturity in our relationship now that we can truthfully talk through this hard 'stuff' of life, and the three of us were able to discuss this new change in our relationship openly.

Although Carrie and I might not be able to be in touch as frequently now as we used to be, what her visits always confirm is that 1. she makes an INCREDIBLE effort to make time for me, and 2. when she is here (or able to talk on the phone) she is FULLY PRESENT with me, in the moment, and enjoying being here. These are true gifts. Travelling here is quite a journey for her and Sam. And she assures me that I WILL see her once a year--and that, in and of itself, demonstrates her commitment to this friendship.



Carrie and I met at Davidson on move-in day. We were freshman hall mates, Davidson dance troupe co-directors, and roommates for 1 1/2 years. Freshman year we were often mistaken for twins on our way to the dining hall together (often dressed in our matching jean overalls). Honestly, I don't think either one of us can figure out HOW anyone could think we were twins???!!!! But we certainly have been connected in a deep way for almost 14 years.

The two of us have had our share of struggles and ups and downs in our friendship. Sometimes one or both of us thought we might lose each other. I don't know why we struggled so, but we look back and know it was part of 'growing up'. I suppose any two people who spend so much time together--living together, directing dance troupe together--and under the stress of Davidson are bound to encounter conflict.

Last year, when she asked me to be her maid of honor in her wedding, I was so moved. I knew that we were friends for life, no matter what. I knew Carrie wasn't going anywhere. And Carrie shows me that over and over again. Having her and Sam here is heaven.

As our day together drew to a close we walked into Carrie and Sam's room, where I layed on the bed and they promptly fell onto the bed also. The three of us (with Carrie in the middle) just layed there on our backs and enjoyed a few last moments in each other's presence. However, as we peacefully tried to enjoy this moment Asher found Sam and Carrie's bare toes irresistible! Then, he pounced on the bed with us and we ended the night in hysterics. (Sam, where are those pictures you promised that you took of Asher demonstrating his foot fetish!?)

I was able to get up the next day at lunch time, throw on some hose and clothes, squeeze in a few more moments with them and a few more hugs to top off a perfect visit. I had asked sheepishly the night before if I would see them again, and Carrie assured me that I would see them next year. So, as we hugged goodbye and I watched them pull out of the driveway, I held closely to those words', "We'll see you next year!"

So, Carrie, I thank you for sticking it out with me. For getting through those crazy college years. For committing yourself to this friendship. For taking time out of your hectic schedule to travel all this way. And Sam, I thank you for making Carrie so incredibly happy, for helping Carrie and I to nurture our friendship by travelling here, and now, for becoming my friend too.

After Carrie and Sam left, just as after Angela left, my heart was full. And my foggy mirror continued to clear. (Boy, if only we could use a 'defrost' button like in cars and not have to do all this emotional work, life would be so much easier!). The hardest part after Carrie leaves is that I just miss her MORE. In just 24 hours I get used to having her around, like having her as a roommate in college!

As always, thank you for the blessing of your visit. I can't wait to see you next year! You're VANTASTICK!

Lots of love,

Emily


Photos: Hanging out under the maple tree. Sam enjoying being surrounded on either side by two beautiful women (haha!) No worries, he only has eyes for his wife! :); Carrie and Sam getting dinner ready when I woke up from my nap; All of us under the maple tree again--even though it's not as 'flattering' because it's less 'posed', we're all laughing and my eyes are all squished up, I love this picture because it shows how much joy we were all truly feeling to be together.

Angela Zips in from NYC!

Just as Loralea departed, Angela called to say, "Hey Em, I'm making a last minute trip home for Father's Day weekend! I know your pooped from all your visitors--and I wish that I could space them out for you more--but if you're up for a visit, I'd love to see you." At the time Ang called I was feeling pretty 'down and out' about life in general as I neared my nine year anniversary. I told Ang I'd love to see her, but I wasn't sure she'd want to put up with me! She said not to worry about my state of mind, she wanted to see me anyways.

I share this exchange because it is so 'classic Angela'--always loving, always considerate, always faithful, always loyal, always honest, always catching me when I fall, always genuine, always a great listener and problem solver, and always, always going above and beyond to make time for me.

If she has a lunch time when she has time to chat, she'll call me because she knows it's my 'awake time' of the day. When she is in town for a visit with her family, she plans her time to be here when she knows I can be awake and always squeezes in time for me. Honestly, with her busy NYC style life, she never ceases to amaze me. I never fall off her radar.

I know she's reading this blog and, in typical Ang fashion, completely NOT taking in these compliments. I'm the mush of the two of us. I'm the one who loves to say "I love you", she's the one who demonstrates her love through actions--her calls, her emails, her visits.

Angela and I have been friends since fourth grade. Our friendship is my 'oldest' in years. Never, in our entire friendship, can I remember a rift worth, well, remembering. Of course we had petty things I'm sure--we were teenagers once upon a time (and teenage girls are the worst!). Our friendship has remained, no matter how long we may go between seeing each other or getting to talk on the phone, stable and constant.

When I first got sick, I remember Angela feeling scared as to how it might change our friendship. What would we 'do'? Now we could just hang out and talk. (I don't know why she had any doubts...we spent our teenage years with our ears attached to the phone and forcing ourselves to get off of the phone by counting to three and making ourselves hang up! Haha!)

Honestly, we've just grown closer. Angela taught me that friends who are the same at the 'core' will remain friends as the other layers peel away. With other people, we may start out as 'great friends' but as the layers peel away, the friendship doesn't make it. Well, we've peeled away the layers, and we still love each other. What started out as doing every single school project possible together, homework over the phone, and playing at each others' houses has grown into an adult friendship that is so precious and so rare.

How many friends do we keep for such a long time? How many friends do we find who love us since we are so young? How many friends do we find who no matter the distance between us, no matter the life circumstances, they are always there?

Angela's visit began a real turning point for me emotionally and spiritually. At the time she arrived we were both struggling in our own ways, but on a basic level we both felt, as she taught me 'too chaotic in the head' (a Buddhist saying her mother had just taught her). Ang and I are both out-loud processors (and over-analyzers of everything!) and we fall right into helping each other process whatever is going on the second we see each other. As much as we still love to talk on the phone, when we see each other in person the visit is beyond amazing!

I was struggling with a failing friendship, a feeling of failure at relationships, the intangible process of chronic illness and healing, my feelings that I can't ever keep up with what I want to, and my lack of tangible things in my life that nourish me. I was also, quite plainly, sad and in pain over the losses and grief I felt relating to another anniversary. I was definitely feeling like Little Miss Grumbolina!

She's essentially grown up in this house, as I've lived here since I was nine months old, so she helps herself to water and hanging up her coat and making herself comfy. And we dig in to the hard stuff of life.

I don't have to filter for Ang. I don't have to be anyone other than me. Even if that's a 'me' that's struggling to find my way. After I posted about my nine year anniversary (soon after her visit) she emailed me to remind me that sick or not, she was going to be there alongside me.

She wrote: "It has been hard traveling this journey over the last 9 years alongside you. But, it has only been hard from a friend's perspective because I can't do anything to make you better. You always amaze me with your presence and energy when you are able to share it and your insight and perspective. I hope you are nearing the end of having to acknowledge 'getting sick' anniversaries and we can celebrate other things together instead. But, regardless of what is to come, you know I'll still be hanging around."

The power of such words from those I love the most is overwhelming when experiencing a dark night of the soul.

She taught me a Chinese idiom that day she visited. It related to the idea that our heads can get too chaotic, and when they do it is like we are looking through a fogged up mirror. When we give ourselves time and have the space to gain perspective, the mirror begins to clear.

That day, the mirror did begin to clear. And it has been clearing ever since.

Thanks Ang, for the perfect timing of your visit, for another great phone visit on Monday this week, and for the gift of YOU in my life.

Much love,

Em

Photo: Ang (in her jeans because "no one wears shorts in the city"! I told her she wasn't in the city now!) and me (too bad I didn't have my new 'do' yet, so I could have looked more NYC stylish too!)

A Trip to the Beauty Shop!!!

Today I made my first journey outside of the house for something other than a doctor's appointment in over two and a half years!

I got my first professional haircut at a beauty shop since the fall of 2004! I have been so excited about this I haven't been able to stop talking about it!

Other than a 'real haircut' by my Aunt Jeanette (who is actually trained as a beautician), my mom has been cutting my hair. She's been doing a pretty good job (considering she is certainly NOT trained in this arena!) and she's certainly been saving me a LOT of money! HOLY COW was I in for sticker shock after paying for the haircut, tip, and some 'goop' with which to scrunch up my new layers.

Judy (the hairdresser) says my layers are quite 'in style' right now. So, even though I still never really leave the house, I can at least be in style for my visitors! And, I'm sure Asher will appreciate it. Haha!

It's amazing what a lift something so simple as a haircut can provide. I swear I should go to the beauty shop more often just for the ego boost! (Oooh, you have such beautiful hair! Oooh, you look fantastic! Oooh, you don't look 31 you look 20! Oooh, you look great!) Geez! We all need that everyone once in a while!

So, that's my big news of the day! I am just so excited about this milestone. I feel like I am beginning to really see new progress in my healing and I am just thrilled. The tortoise is out of her shell, and starting to crawl forward!

Hopefully I can re-create this look at home with little to no maintenance! I shower at night, and just spritz my hair with water in the afternoon when I wake up. So, I should be able to take advantage of my natural curl, spritz, put in goop, scrunch, let air dry and be set for the day. After nap: scrunch again! I never spend more than about two minutes on my hair!

Now, it is definitely time for a nap! But, I'm just soooo happy and excited!!!

Blessings,

Emily

Up, Up and Away!

Time again to increase my Lyme medications--the focus being on increasing the minocycline (antibiotic).

Since April of 2006 I've made it from one teeny tiny 50 mg pill per week to two days on/one day off/two days on/one day off, etc.

I'm now going for 3 on/1 off/2 on/1 off/2 on/3 on/1 off/2 on/1 off/2 on/ 1 off/3 on, etc. (Oh what a joy this is for my mom, who has to fill my pill packs!)

So, I've just done round one of three days in a row and am herxing miserably. I don't know why those three days in a row knock me out so badly! (To put this in perspective, if you had a sinus infection you might take 2-3 of these pills per day without problem. I'm taking ONE pill 5x/week. Within a year and a half I've taken fewer pills than a teenager with acne might!)

I tried my best to watch the fireworks on TV through my foggy brain, but I don't think I really took in much of the display (which is supposed to be one of the best in the country). I think the fourth of July has been pretty much a disaster every year since I've been sick!

So, it's 165 minos down and ????? to go.

It's up with the mino, and perhaps 'away with me' for a bit, as I hang out in my tortoise shell.

So, if I'm more quiet than usual...it's because I'm focusing on this latest increase in antibiotics.

When I told my friend, Jeannine, that I often hold off increasing my meds because I'm afraid it will make me unavailable to my friends when/if they need me for something...she gave me the what for! So, I'm working harder to focus on treatment and praying that you'll all still be there when I emerge from each round.

I'm making progress slowly but surely. Each time I increase and get through the herx, I feel stronger than I did before. So, I'm trying to say 'Bring it on! This is my way out of this shell eventually!' (So much easier said than done, especially when I'm whining about how badly I feel! haha!)

So, up I go with the mino.
Away into my tortoise shell.
Hopefully to emerge stronger than before.

Blessings,

Emily

Photo: Well, I can't stand a blog entry anymore without a photo, so I'm adding this one a bit late. Today (July 20th) the clouds were perfect against the background of a clear blue sky and the green of the trees. This photo makes me think of flying up, up, up and away to better things.

It's Official TODAY: Mom's RETIRED!

Now that the fiscal year has ended Mom is 'officially' retired, although she finished her last ever batch of grading papers, giving exams and cleaning out her office on May 10th. Most of the celebrating occurred that week--since she hit 'The Trifecta', as my friend Jeannine coined it--birthday, Mother's day and retirement all in one week!

Mom keeps saying "You've already done enough to celebrate my retirement" or "You're making too big a deal out of it, it's not that big of a deal."

Well, I disagree! I am feeling such excitement for my mom as she gets ready to enter a new adventure in life. Along with her, I am also feeling the angst of the transition from career-woman to retiree, the relief in no longer juggling career and care giving, the sadness in losing the connections and social networks provided at the university, and all of the other emotions that go along with such a life change. Mostly though, I feel an excitement for her. And admiration.

For the past few years she has been saying, 'When I retire....' and filling in various things she will have time to do. She's READY for retirement. Should've made her pay a nickel every time she said, "When I retire..." because I'd have quite a chunk of change by now! She's already spent endless hours out puttering in the yard and whipping Asher into shape with long walks. She's longing for days of sitting on the porch reading books and curling up to watch a few good movies. So far, we've been so busy with company she hasn't had much R and R yet!

Not only am I excited for my mom, but I am also proud.

Having two parents with PhDs is, well, humbling. The thought of going on for a PhD makes me feel slightly nauseous, weak at the knees (Wait a minute? Don't I always feel this way?) and well, terrified. I admire both of my parents for finding their passion in Sociology at such a young age and devoting their entire lives to it.

In my mom, I admire that she 'stuck it out', that she persevered pursuing a PhD when few women did. When she tells me the stories of discrimination that she faced I am shocked--and saddened that such discrimination still occurs for women today. In graduate school she was initially given a grant--which would pay for her schooling without her having to do an assistantship. The grant was revoked on the premise that, because she was a woman, she would be unlikely to actually work in her profession! Later, after earning her PhD and beginning her teaching career she was told, upon requesting a raise that, "She had a husband to support her so she did not need a raise."

I admire that she found a passion for Sociology and maintained it for all of these years. I cannot begin to imagine choosing one of the things that I am passionate about and dedicating a lifetime to it. Our days of 'talking shop' will not end just because she is retired, nor will her days of underlining and clipping articles in the paper relating to anything Sociological.

I admire that she and my Dad taught me to be a 'little Sociologist' myself--and I feel proud when I point out something about gender or race or family that I observe and my mom says, 'Wow! I didn't catch that!'. I am incredibly grateful for having a mother who taught me to look at our society; to care about inequality, poverty, gender roles, race, politics, health care, family, marriage, social policy, education, social class, work-family conflict, etc. and to look at how these various factors affect our society.

I admire that, despite having a job that itself was often demoralizing and demeaning, my mom never sacrificed her integrity. She never stopped caring for the students or doing her best to teach them. I admire all teachers who give their lives to expanding the minds of others. She continued, until the end, to be innovative and engage her students in the classroom. She also served as a listening ear to many students over the years, as she believed strongly that faculty should be available not only to teach the students but to help them through a difficult situation. Over the years she helped students who confided in her about pregnancies, drug abuse, cancer, marital problems, abusive relationships, etc.

I admire my mom for being one of the women who set the precedent for my generation; One of the women who fought for my generation to have CHOICE. Because of the women of my mom's generation we have a choice--to work, to stay home, to pursue higher education, to have children, to not have children, to be financially independent, to marry, to not marry, and if married, to leave a bad marriage and take care of ourselves.

She taught me the value of education. My parents saved money on other things (we still have furniture purchased from Goodwill during their days in graduate school!) so that I could go to the college of my choice. My mom has always told me, "Your education is the only thing you will ever have that is yours and yours alone." I just wish part of my education had been taking an actual class from both of my parents!

In all that I admire, I feel sadness that my mom could not pursue her career more deeply; that she could not do the research to be promoted in her years at the university. I wish that teaching itself was as valued as research, but this is not the case! I feel sad that her family obligations kept her from pursuing research and advancement opportunities more intensely.

At the same time, however, I feel incredibly grateful for the sacrifices she DID make. I am who I am because of her. And while she gave up career-time, I got time with her to have her just as 'mom, eating Ritz crackers with PB and Marshmallow cream and telling her about my day at school, rather than always having her as Dr. Mom the Sociologist. Would we have the same loving and close relationship that we do now if she had worked more? Maybe, maybe not. We'll never know. But, I 'Thank You' is hardly enough to express my appreciation for what she did give up for me.

So, CONGRATULATIONS MOM! I love you and I am so proud of you! Thank you for all that you have taught me about being a woman, about sociology, and about life.

I wish you many years filled with new joys, new adventures, new passions, excellent health, loving friends and family, and plenty of time to "play" in the yard, take long walks, read good books, watch movies, travel, volunteer, and take a few naps here and there!

With all my love,

Emily

Photo: Mom and I--taken June 9, 2007.

A Davidson Summer Continues: Loralea Visits

I've been calling this my "Davidson Summer" because within six weeks time, three friends from Davidson planned visits--Marla, Loralea, and Carrie.

Loralea arrived in pregnant glory from South Carolina for a visit June 8-10. I wanted to invite her for a visit to celebrate both the upcoming arrival of her baby as well as her graduation with a Masters Degree in School Counseling--a hard earned degree that she did while still teaching high school math. I know she is enjoying the summer break with NO classes, NO teaching and time to spend with her husband and dog while getting ready for baby.

At Davidson we were freshman and sophomore roommates. Davidson uses the Myers-Briggs test, the four essays you write for college admission, plus an additional survey about yourself to pair you with your freshman roommate. They also work to create a cohesive hall unit. It's pretty amazing what goes into choosing roommates, who often become lifelong friends as Loralea and I did.

It was really great to see Loralea and to have one more all girl's weekend before she has her baby (sex unknown and will be a surprise, which makes it so much fun!). We got in a LOT of talk time, just as I did when Marla was here. Poor Loralea is more of a morning person though, and I'm more of a night person, so I think I kept her up a bit late! I was able to get in several hours on each day she was here to spend time with her. I think I made it past 11 pm! This is something that has not happened since before my gallbladder surgery. Have you noticed that everything hinges on before and after that horrible date in January of 2005???? Yikes!

We, of course, ate good food, hung out, TALKED, and got in our share of hugs. We were definitely known at Davidson for our loving friendship. Marla commented before Loralea's arrival that we'd probably spend the whole weekend stuck in a hug! We didn't, but did catch up on hugs!

During my nap times/sleep times Loralea got in some relaxing time for walks, painting her toenails, lounging on the porch to read a magazine (the weather was perfect), watching a bit of TV, and taking some naps herself! The pace of life here always seems so slow to everyone else and they get lots of down time. For me, when I have visitors, I'm in high gear!

Having friends and family take time out of their busy lives to spend the time and money to travel here is a HUGE blessing that does not go unappreciated. I cannot imagine doing this journey without my friends standing by my side--and coming to visit.

Phone and email can never replace having a friend's presence in our home. Just being together and getting to hug and talk in person is such a special experience. With Loralea's busy schedule I am not sure when we will get to see each other again...so I am incredibly grateful that she came this summer! Maybe someday I'll be well enough to travel to the great state of South Carolina and meet her little one.

Thanks Loralea for a great all girls weekend filled with long talks and the comfort of being with a friend who knows me and loves me for me! (Still loves me after some of those crazy roommate things that happen when we are 18!)

Blessings,

Emily

Photos: Loralea and me outside, Lorlaea lounging on the porch reading a magazine, Loralea posing for a six-month prego 'belly shot', Loralea and me in our kitchen.