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Saturday, January 30, 2016 - Week 13

The parents have landed. With them came lots of goodies. Much of it I had ordered - it's our six month resupply mission - but some were gifts from them. Happily there are new games to add to the collection, some new cat toys that the cats have been busy exploring and clothes for Ella and myself. There's no heat in the buildings in Doha, so when the temps drop outside, there's no way to warm up the inside. Ella being so little, she struggles to maintain her body temp and has taken to laying with inky or on top of the wifi router. She also keeps puffing out her fur in attempt to warm herself. She now has two sweaters and is much warmer. It wasn't something that crossed my mind to bring to Doha with us, but there you go.



This week with my parents has been good and bad. I'm glad they are here. It's been six months since I've send them. On the other hand, they've arrived two days before my company had mass layoffs and were present for the stress related to that. I've worked in places where my pay has been cut, where there have been talks of cuts, but nothing like this. This was a whole organization laying off who knows how many on this day sort of thing. Teams were decimated. In the US, if you lose your job, you've just lost your job. In Qatar, our ability to live in the country is tied to our job. When your job ends, you lose your housing, your job, your friends, your healthcare, everything. You don't get to stay until you determine what's next. Immigration is informed. Your exit permit status changes. And you leave the country within a certain amount of time. It's scary stuff. Walking into work Wednesday was like waiting for a firing squad. Parts of the day I remember clearly. Parts of it I remember nothing at all. I was asked to wear my social work hat for the day and help with employee assistance. As such, I was told early in the day that my job was safe. Other friends were not so lucky. I'm blessed in that most of my core group is in tact. But it's a hard divide. Coming home that night was a challenge too. My parents were happy for me but knew it was bittersweet. It's been a long time coming as we've know. Since August that cuts were coming. I'm happy to be on the side of knowledge even though it hurts. On the plus, it means I can settle a little more here. So we went shopping. I've got patio furniture and pictures on the walls. As my friends have said - it looks like I'm staying a little longer now.

For entertainment with the parents, we attempted kayaking but it was cancelled due to the cold and windy weather. We've had a game night with friends over and I've sent them to Dubai, where I'll meet up with them in a couple of days.

The biggest drag is that I've caught a cold. My crappy immune system meant it immediately turned into a sinus infection. So now I've started antibiotics. I don't have much reserve anyways. This isn't helping. It's a hard balance when I've got guests - especially my very active parents. I feel like I should do more and be able to do more than I really can. It's hard for them to fully grasp how sick I am at time - especially for my father who has been more removed from the day to day conversations I often have with my mother. And because I want to be able to protect them. Lupus is hard and ugly and brutal at times. And it follows no rhyme or reason. So when I'm coming back from feeling more stiff and swollen and then you add an infection to that, it's a challenge. I resolved it at times by sending my parents off to do things without me. Balancing. Here's to hoping the antibiotics quickly do their thing and the reduced stress in a more certain job status will also help.

Still here,
D

"Because of their size, parents may be difficult to discipline properly."
-P.J. O'Rourke

Saturday, January 23, 2016 - Weeks 12 and 52
The wolf has not quelled as I would have liked. As such, a quick pulse up and back down on the prednisone was in order to help manage until the methotrexate could take hold. It left me cranky, my heart racing all over the place, antsy, yeasty and exhausted. I still hurt. But I'm hoping this will make things better in the long run, especially as my parents are due in Monday.



Outside of the wolf, it's been an interesting week in Doha. I presented at my first professional conference here with a poster on child friendly practices in the ED. It's not common practice at all to consider how you are treating the child but rather to move through the process as quickly as possible and use the necessary people to hold the child in place. Despite research against this being best practice, the lingering psychosocial effects, and the ineffective use of staff resources, it's the norm. Many were skeptical that the methods work so it's intriguing to watch them try to understand. It's even more fun to see the light bulb click when they see it in action like they do in my practice.

The sports event of the week was the U23 championships. Went with my crew to the Korea vs. Jordan match, which was decently played by the athletes and hysterically participated in by the spectators. At one point they actually lined security up between the two sides as we changed back and for. You'll be please to know "my" team won (Korea).



It's been foggy in Doha these last days. The fog rolls in at night and leaves shortly after sunrise. It makes for beautiful sunrises and gives rise to a different appreciation for the topography of the place. In my own world, the fog rolls in and out as I move through lupine life. It's the balance between wanting to do and can actually do. Solitude vs solidarity. Challenges, changes and status quo. So I make my way through the hazy days and hope for peace in the moments and in those yet to come.

Always,
D

"There is something to be said for sitting still and letting things come clear, the way the morning fog burns off the lake."
-George Witte

Bonus: January 17 marked my one year anniversary of moving to Doha. One year ago, I hugged family and friends goodbye and boarded a plane to Doha. One year later, through the good, the bad and the just plain odd, there have been moments of joy, laughter and friendship that I would not have traded.

Saturday, January 16, 2016 - 10 on 11

In my Doha life, it's been a quieter week. Back regularly to the gym, but going slower. My body aches and gets tired, so I'm trying to head those signals, much though I hate to. I re-certified for CPR on Wednesday. I hadn't realized how much my wrists and hands hurt until I was pounding away at the dummy. I did decide to do a little pampering this week. My hair was finally long enough to donate, and though the lady cut more than I wanted, I'm pleased with the results. I do miss my longer hair but it'll grow back and the shorter hair doesn't pull on my curls and requires less care. The bigger news is that I colored it for the first time. It's still way to red for me and I'm not convinced that I won't take it back out again but we'll see. I contemplated getting a mani/pedi but with a compromised immune system, it too risky if they nick something or don't clean the instruments properly. In the meantime, I'm doing it on my own. Lupus issues.

I went to the doctor Tuesday. We are both pleased that I am doing better than in October when I crashed and burned but good. We both want me off the steroids (finally on the same page there...). A quick ultrasound of my hands reveled minimal swelling, so it's mostly pain and stiffness. My doc and I disagree a bit on the lupus disease activity index (SLEDAI) because he doesn't seem to read past "or" (tenderness or swelling, oral or nasal ulcers) but we are getting there. So the answer is upping the methotrexate to 10mg per week and then reducing the steroids again. It's what I expected. As I told my friend, I'm happy that there is a plan for the meds and hopeful this means I'll get off the steroids for good. I'm sad that I even need it. It still feels like my body betraying me even if I have lived with it this long. I hate that I work hard to do my part via food and exercise and life and that's not enough. I can appreciate the wonder of having treatment and having access to it without being entirely happy that it's required for me to live. Korea, again.



It's strange how such tiny doses of medications can have such an effect. It makes me bow down to those on the highest doses across all the diseases these are used for. And while I am currently maxed on one chemo and another med, it's a baby dose of mtx and pred. I respect that my whining is minimal compared to others. I consider myself fortunate in that regard. In my own journey, it's still hard and something to grapple with, especially as I look out with no end in sight. This is the dose until things go awry, be that in weeks, months, or years.

The first increased dose left me nauseous and tired. I'm still not all that hungry and having some GI issues with it. On the bright side, it works as its own form of calorie control. Holding the pred at 2.5 this week and will begin the taper again next week. Progress, in its many strange forms...

Contemplatively yours,
D

"You have permission to rest. You are not responsible for fixing everything that is broken. You do not have to try to make everyone happy. For now, take time for you. It is time to replenish."
-Unknown


Saturday, January 9, 2016 - A Colorful 10
This week held my birthday. It's strange to think I'll be 33 this year. I was diagnosed at 14. It's been a long ride, especially over the last year. I remember turning 29 because it was the first time I was at a place where I've been sick longer than I haven't. How far I've come since then. This year, I'm pleased that while I still have odd tastes and nausea, I am not bordering on the hospital or in it sick for my birthday. Victories!

My wonderful friends got together to celebrate with me. There were finger foods, cake, and time to catch up. I am blessed here to have friends that have become family. It's one of the bittersweet pieces of expat life and we are making memories to last a lifetime.

Saturday brought with it the Color Run, billed as the #happiest5k. We walked, ran and danced our way through the course and reveled in the color stations. Started in a white tee and by the end, it was thoroughly covered! I was able to do it with friends new and old and complete with a tutu!



The biggest downside of the week is that the two milligrams of prednisone turned out to be my new limit. I've started to get achy, stiff, exhausted and with sores in my nose. I see the doctor on Tuesday for an update to the plan. It's hard not to be sad with this. Setbacks happen. With this roller coaster, they are expected. That doesn't make each one hurt any less. It's hard to depend on medications that do so much damage and it's challenging to not be able to get off the steroids I loathe so much. Ultimately, I have to listen to my body. It's telling me to slow down. So I hold the prednisone at 2.5mg. I add the extra comfort items to my bed and places I exist. I slow the runs and swims to easy paces. I feel sad. Angry. Tired. And I move through. Next week will be a new plan. For now, I enjoy my time with friends and lean on them for support. I listen to my weary body. And I continue to move forward through the nights.



More seasoned,
D

"You will never be completely at home again, because part of your heart will always be elsewhere. That is the price you pay for the richness of loving and knowing people in more than one place"
-girlgi.com

Saturday, January 2, 2016 - Beginning at Nine

This week found me in the UK, outside London, near Cambridge, visiting with family friends who have known me since my birth and who met my parents when they lived in the Emirates. It's a full circle. It's nice to be around others who understand some of the odd nuances of expat life, particularly as it pertains to the Middle East. I have rarely laughed so hard.

It's also refreshing to be back in the land where so many things are familiar. There is a large British factor in my Doha life so things that previously were luxuries on visits (read biscuits) are now commonplace. Going to the UK felt a lot like going home. It was a good place to celebrate Christmas. There has been more food than can feed a small army and a turkey larger than a one year old. We went to the horse races, hung out with family, watched the Doctor Who Christmas special (!!), and went punting in Cambridge. I think I could spend a lot of time touring around Cambridge.

I also found my way home from my winter adventures. In many ways, it's bittersweet. It's wonderful to be back with my cats, to sleep in my own bed, see my Doha family and friends, and find my routine again. It's hard to be done with traveling and to return to the real world with laundry and work and less contact with others. Balances. I brought back gifts for others and some for myself, including a robot vacuum that can hopefully help out with the housework and make my life a little easier.

I rang in the new year with friends, who came over for conversation, games, and food. A quiet affair but perfect since I had just flown in that morning. Now I'm catching up with friends, laundry, and grocery shopping. Finding the normal again.

In traveling back, I flew the day after chemo. Bad plan. First time I've ever sat with the airsickness bag ready. Emirates was a great airline in that they have 110v outlets in most of their long haul fleet. This meant I didn't need to use my battery for my CPAP and I could use the humidifier! Made for a much better sleep. On the way to Doha from Dubai, there were fewer passengers on the plane, so the flight crew kept checking on me to make sure I was ok. I think my pale demeanor and lovely green mask worried them. It was very sweet.

Despite travel (and indeed to encourage and allow it), there are pills to take, places to run, balances in eating. My stomach and taste buds are affected by both the medications and the disease. Things that previously tasted great now don't and tolerating different and rich foods is a challenge. It's nice to have turkey around. And fresh pastries. That said, my body is ready to return to what it can tolerate. Yet another way that lupus subtly and not so subtly affects things.



This was week nine of methotrexate. Still with nausea and other GI fun. Still better than the alternative. Prednisone? Down to 2mg and going strong!

Welcome to the next chapter,
Deirdre

"A good friend is a connection to life — a tie to the past, a road to the future, the key to sanity in a totally insane world."
-Lois Wyse

Saturday, December 26 - Eight Lords a-Leaping
They don't look like much, but these six pills are the difference between life and some not-so-pleasant sequelea for me. They don't even taste like much, but I can feel them at work in my body. Some of the work is good - my joints hurt less, my heart and lungs don't scream in pain, my brain works better. Some of the work is less than ideal - my mouth has different ulcers, I'm bruised and common bugs and I really don't mix. On Tuesdays, it's a double dose with both azothioprine and methotrexate together. When I think back to how I was eight weeks ago, I don't even want to go there (ever again really, although I know I'll have to some day - it's the nature of the wolf). That doesn't make swallowing these pills any easier. I can know I need them. Know how it was before. And still, I can resent the need to even take them. Worry for how I'll feel this week. And wonder at the damage, both good and bad, that I'm inflicting when I swallow. I have made a peace of sorts with my wolf (picture north and South Korea). I do what I have to in order to survive. I still get sick of swallowing the pills. It is what it is (again, Korea).



It's funny. Traveling long haul frequently enough, since it's the only way to get home, short hops like the couple hour flight between Hamburg and London seem relatively mild. The most shocking part was being on an aircraft that did not have entertainment systems in the seat. And that they let me off in a couple of hours. Take off and arrival in the same day and no sunrises or sunsets between. Still had the mask on. Still sucks. Hard to look different - I feel so self conscious and marked. Reminds me of my hairless days. It was hard to go out because it felt like that was all that could be seen. It was so much better than the constant itch of having hair everywhere (like having just left the hair dresser all the time) and how sensitive my head had become. The mask is better than the illness that can knock me down and set me back. I don't wear it everywhere I should but do on airplanes hands down (mask on?). Hopefully it makes enough of a difference.

Between the flying, I had a lovely stay in Germany. I reconnected with family, visited more Christmas markets than one can shake a stick at, saw Star Wars, drank glühwine near daily, rested and ran. Had a minor mishap that involved falling down some stairs (stone cold sober...klutz gone wild again), hence the bruises above. Ran everyday. Not far, but enough that it felt good and I'm continuing to build on my base. It's been about 15 years since last I was in Hamburg. I was a student then. How very much has changed. It was good to go back and see the country during advent. It was equally amazing to see the German roots with which I have grown in their proper home. Christmas trees with candles, Christmas markets, decorating late and with true distinction for the days of Christmas. Magical.



Merrily,
D

"Happy, happy Christmas, that can win us back to the delusions of our childish days; that can recall to the old man the pleasures of his youth; that can transport the sailor and the traveller, thousands of miles away, back to his own fire-side and his quiet home!"
Charles Dickens, The Pickwick Papers

Saturday, December 19, 2015 - 7 and 17

The 17th of December marks eleven months since I left for Doha. In what’s become something of a tradition, I headed to the airport. At the six month mark, my friend and I left on the 17th to go to Kenya. This time, it was Germany via Dubai. I’ll spend a week in Germany with family and then a week in England with friends. As I mentioned last week, it is time for a break from Doha and the craziness contained therein. I love that I am able to travel more with my new job. The better pay, more time off, and the central location lead to some spectacular adventures. It was a long but good travel day that went more smoothly than I expected given that so many people are traveling right now. In Doha, it’s a double-whammy. First, many of the expats are leaving to enjoy the winter holidays at home. Second, December 18th is Qatar’s National Day and many of the nationals are out celebrating, making the roads to the airport crazier than normal (which, my friends, is saying something). Still, made it through check in, immigration, and security with minimal challenges. Traveling with CPAP and lots of medications always makes it a little stressful because one never knows the questions or concerns that might arise. Arrived safe and sound in Germany and am settling in here. Only hiccup in traveling was that I left my cord to charge my phone in the lounge in Doha. Realized when I arrived in Germany, so went out yesterday to purchase a new cord and I’m back in business. Then went to see Star Wars (very much enjoyed) before going out to dinner at a local diner. It’s been a long time since I have been to Germany and it’s interesting to see the similarities and the differences. And though the locals are not, I am quite enjoying the weather - overcast and somewhat rainy - and the greenery. I recognize that a lot of the trees have lost their leaves, but there is still green grass and trees and that has been wonderful to see. I’m here for a few more days before continuing the journey.

A couple of interesting health developments this week. First, for my job, we are required to undergo titer testing to ensure that we are immune to many of the contagious diseases (measles, mumps, varicella - the things we have been vaccinated for). I’ve done it for my last job so I wasn’t too worried. Went and did it a month ago and received an email to come back and repeat varicella because the lab was out of the reagent to test when they drew the lab. Upon returning, the paperwork showed I was no longer immune to measles. Typically, one would just receive the vaccine again and be good to go. However, measles is a live vaccine and I cannot receive it due to my current chemo regimen (both rheumatologists said NO!). As an added bonus, there was a measles case at work last week and I cannot remember if I worked with the patient (I see lots of kids with rashes). Exposure no immunity = no bueno. Because I found out about a week after the potential exposure about the lack of immunity, I was past the point of really being able to benefit from post-exposure prophylaxis, which in my case would be IVIG. This means we are now engaged in watchful waiting. Incubation is 7-14 days. On day 9ish, I hopped on an international flight. At least we’ll know where the next outbreak tracks from. In talking with occupational health at work, it was also decided that since I can acquire the previous titers showing immunity, we are going to use those since it’s rare for the immunity to completely wear off. Records received and sent along. Now just hoping not to break out all rashy...



The second development is that I can tell the MTX is affecting my counts. My platelets must be low this week because I am covered in purple-y bruises. The lab draw from the aforementioned varicella test has left me with a particularly interesting vein shaped bruise running up my arm. Because this was somewhat expected, it meant that plane travel occurred with my handy mask in place to limit exposure to germs. I find it ironic because I work around sick people, and a lot of them, several days a week, but I am still supposed to take care in crowds. I find the balance where I can with the process. Purell everything. Limit time in crowds. Send positive thoughts to whatever gods may be listening. Ignore the strange glances when I am wearing my mask. Wonder about the bruises. Move forward.

And so we celebrate. A return closer to normal. Time with family and friends. A break from the day to day of work. Peace at the last.

Yours,
Deirdre

PS: Seven doses down and at 4mg/day of prednisone. Progress.

“May God support us all the day long, till the shades lengthen and the evening comes, and the busy world is hushed, and the fever of life is over, and our work is done. Then in His mercy may He give us a safe lodging, and a holy rest and peace at the last.”
-Newman Prayer

Saturday, December 12, 2015 - 6 Weeks and On the Launchpad

I leave December 17 for two weeks holidays in Europe. I'm very much looking forward to it. I need the break as I am rather crispy these days. Short tempered. Frustrated. It's hard. I have amazing friends. I get to live in a really cool place. I get to travel. That said, it's hard. I live in a foreign culture with rules that change all.the.time. It makes it hard to sort out how I feel sometimes and there are days where things just overflow to the point where one gets to their limit. It's a clear sign a break from here is needed. I'm looking forward to the travel but at the same time, traveling with lupus is a challenge. I have to remember to pack all my normal and rescue medications. I'm immunocompromised and going to crowded places, so I need to remember my mask and wear it. I have CPAP so I've had to get a letter signed by my doctor to verify I need it and have everything cleared by the airlines so it can travel with me for use on my overnight flight. And I have to do all of this in a way that in a way that doesn't exhaust. I'm so thankful I've figured out how to travel with this and have the opportunity to do so. It's just interesting to think about the extra list of things to take and the way that chronic illness changes so many facets of one’s life.

The big methotrexate changes at present are all GI related. Coke tastes strange so I find I'm drinking more ginger ale these days. The roof and insides of my mouth are peeling as are my lips - the very early stages of mucositis. And the nausea and other fun have kicked in. My joints feel better than they did as does my body. I'm starting to feel a bit more achy and my chest has started to hurt a bit as I've tapered to 5mg of prednisone. It's the dose I was on when I crashed into this latest flare. May my body tolerate this time. It's hard because I get to a point where I just don't want to swallow any more pills. Some days the count is at 30 and I get sick of it. Then I remember how it was six weeks ago and swallow I do. It's so good to be getting relief. It actually allows me to have something of a social life and social I have been.

Sunday was great fun – got together with my crew to celebrate Christmas. We had dinner and then went to a tree lighting. Home by 7:30 and in bed by 9, but still last weekend caught up. Woke up Monday feeling run over. Food was not staying put and I stayed home. I hate calling in sick. I feel like a failure. A friend came over to watch a movie with me that evening and attempt to entice me to eat. Back at it Tuesday with work, some errands and an early night. Wednesday I had a work get together and then book club, excellent because I was in my front door by 8pm. Thursday was a birthday celebration at a local watering hole, Saturday was an amazing dhow cruise at sunset complete with barbeque and dancing followed on Saturday with Beauty and the Beast - Broadway has come to Doha. Around this I sleep. It goes back to that balance. These days, I need the time with friends. They have become my family here. I need them to nourish my weary soul while I focus on my body. They are good at it – kind and patient and I’m very grateful for that indeed.



Cheers,
Deirdre

”Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one.”
-Jane Howard


Saturday, December 5 - Five for Five

My tweaking continues with taking the methotrexate on Tuesdays. It gives me a bit more normalcy on the weekends and lets me recover while maintaining more of a routine. Oddly, I find that I'm wound up after taking it and have trouble sleeping. Staying in my weekday routine of getting up and going to work helps combat that some. Since Wednesday is a day I'm in the office rather than clinic, it works decently for recovery. I'm just tired and nauseous. I hate nausea but it's better than how I felt before. Tradeoffs.



It's odd sometimes how real life and lupine life collide and separate sometimes. Tuesday I went to see Spectre with friends and then to dinner afterwards. It's interesting because I use an app to watch subtitles to cope with the hearing loss. Not a big deal but it's there. Then at dinner, I'm quietly calculating at what point I've eaten enough to take my meds, trying to time it so my stomach is full but also so I have less time where I'm still out and about so that if side effects kick in, I'm cocooned safely at home. I'm sneaky about taking my meds – hiding them so others don't see. I don't want to separate myself further, even if I feel it in my head. Not that my friends care, and there are some who have seen and been through it all with me, but this is a newer group and intros into this part of my life go slowly. Safer for all of us that way.

The big happening this week is that Christmas came to our house. It started with a care package from my mom containing some of the food products to make winter comfort foods that I can't find here. The biggest surprise? The coveted Ironman cookie cutter! So this weekend meant baking. Lots of it. Tis the season. Also, there is a tree now. Big. And the cats love it. Someday I'll wake up to all the branches still in place. In the meantime, it's fun to watch.



It's so nice to have the holidays here. Cheer is good. Feeling up to doing some of it is good. The downside is that I can feel when I am pushing too hard and it's hard to stop. I want to do more. I feel better than I did. I have to remind myself that I am still healing. This was a bad flare within a flare. It's never been a balance I'm good at and I pushed this weekend. I will say, though, it was fun.

Merrily,
Deirdre

"The body is a bundle of careful compromises."
-Randolph Nesse and George Williams, Why We Get Sick

Saturday, November 28, 2015 - Four Times Thankful

It's been an interesting week. I'm slowly finding my way back to myself. I'm back at the gym running, swimming, cycling, and stretching. It's not as fast or far or as long as I'm used to, but it's happening. My body feels better when it's active, as does my mind. I'm also hoping it will help with the weight I've gained since I injured my knee (fell off a counter, bruised my patella but good) and then hit this major flare that left me bed bound and hazy.

The cold from last week? It quickly morphed into a sinus infection. I'm now working my way through two weeks of antibiotics. I have antifungals standing by because it almost always leads to yeast infections or thrush or both. As soon as I told the doctor what was happening, I was told that because of the lupus and my medications, antibiotics were not a choice but a requirement, as was doing them for two weeks rather than one. Joy :cP

I saw the rheumatologist for the first time since I started the methotrexate. He's pleased with how I'm doing overall though there are still concerns. We discussed my echo in more detail. Turns out the thickened heart muscle and pericardium are on the back of my heart, so it's a little harder to see when they do a traditional echo. He talked about wanting to do a transesophageal echo (TEE) for a clearer picture. Since my chest is doing better than it was and because the course of treatment wouldn't change much, if at all, if there was a diagnosis of active pericarditis, we agreed (after much discussion) to hold off on the test. I've not had a good track record with staying sedated during any scope and since the thickening is likely from my old attacks, I was happy to advocate for no TEE at this time. If things come back or get worse, that's the next step.

In the meantime, I'm continuing on my current dose of MTX. Because I'm also on prednisone, imuran, and plaqunil for the lupus, we are working to decrease the prednisone first since adding the methotrexate. 1mg tablets aren't available in Qatar but I picked some up when I was stateside in August from my rhuematologist there. Rather than decreasing from 7.5 to 5mg, I'm weaning a mg at a time to try to improve the odds that my body will react well to the taper this time, especially since I have failed it so many times over the past 8 months.

He wrote refills for my prescriptions, which is always an adventure here. I've got really good insurance. It covers so much more than my stateside insurance did for less cost to me. That said, it has some quirky features. Because the card expires 31 December, they wouldn't fill scripts past that day. I'm supposed to see the rhuemy again in 2 months, but may end up there sooner because I'll run out of meds and the hospital policy is that refills can't be given unless you are registered to see the doctor. You end up bouncing between the pharmacy and insurance approvals counter while refilling but we got there in the end. One of the downsides is that finding some medications here is challenging or impossible. I'm on gabapentin for migraine prevention and pain management. A couple of pharmacies didn't have it so my rheumy wrote for it to allow me to fill it at the hospital one instead. I'm also on librax due to GI issues including sphincter of Oddi dysfunction. I can't find that med anywhere and I didn't think to get it in August at home. My next step is to contact my doctor stateside and see if she'll write for it. Then I'll have my mom fill it and give it to my friend who is visiting Chicago at Christmas to bring back to Doha. If that fails, then when I go to Germany or England for Christmas, I'll have to find a doctor there and see if they have the medication and will write for it. Challenges, but I find myself blessed to access to the medications that can help me at all since it is out of the reach of so many across the world.

I had labs run as well. Neutrophils up, lymphocytes continue to be way down and I'm having some funky MCH issues as well. The MCH is apparently related to starting B12 and methotrexate. Lymphocytes because lupus. Neutrophils intrigue me. I'm sure they are up because of my current infection. They aren't that high so I'm hoping the MTX is suppressing what it's supposed to and this is a reaction to sinus fun. I'll be interested to see what it looks like once that clears up. It's a careful balance of suppressing the immune system enough that it doesn't attack me but not so much that I can't fight when there is a legitimate attack. In the meantime, my mask goes everywhere with me. Someday, I'll even put it on my face. I hear they are more useful that way.

Thanksgiving happened Thursday. I celebrated with my friends who have become family here in Doha. It was a wonderful evening and we even had turkey that a stateside visitor brought in her checked bag - something that makes me giggle every time I think about it. It was tastes of home and of new adventures and journeys all at once. As wonderful as it was, I'm clearly still recovering as I slept the following day until 3pm. I still would not have traded it for a moment. These people have been amazing and I'm thankful for each one that has helped me, especially in the past couple of months.



Thankfully yours,
D

“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.”
—Melody Beattie


Saturday, November 21, 2015 - Week Three

Three doses done.

The big challenge this last week has been the change in taste. While sweet things appear to have retained decent taste, savory things and meats have not. Instead, it tastes kind of like mold smells. Having figured out (after giving away curry I'd made and couldn't choke down) that it's not bad food but me, I'm learning to work around it. A chat with my mother reminded me that this is not my first rodeo with this side effect. Last time, peanut m&m's and lemonade were my saving grace. This time, I'm not sure. Peanut m&m's are on my no list for foods due to GI trouble. I'll keep experimenting.

Working in a pediatric emergency/urgent care center, I'm constantly exposed to things. As such, I've picked up another cold that is less than fun. I'm starting to notice my immune system come down. I've had a couple of sores on my skin that became infected. Acne is taking longer to clear. And there is this cold. The changes to taste and increasingly dried out lips tell me changes are happening within me. The medication is doing something.



My lungs continue to heal, though the coughing from the cold hurts. The butterfly rash continues to fade. The joints continue to ache. The fatigue continues, though much of that may be this cloudy cold. I'm still at the gym, swimming and running. The weather here is beautiful and I'm hoping that soon I'll feel up to taking full advantage and getting outside to run and cycle.

Peace to you all,
D

"We cross our bridges when we come to them and burn them behind us, with nothing to show for our progress except a memory of the smell of smoke and a presumption that once, our eyes watered."
-Tom Stoppard

Sunday, November 15, 2015 - Methotrexate, Week Two

Week two has brought some interesting changes. My ribs and lungs hurt less. I'm still icing nightly and taking anti-inflammatories, but I can move though the day without the all encompassing searing pain. This week has brought the return of workouts to my life. Slow and steady and not as long as I'd like but I'm working to go by effort. I'm lasting between 15-30 minutes and am alternating swimming and run/walking. Combined with the decrease in prednisone (because I went rogue on my doctor who wanted me to go from 4 to 7.5 and I wanted to feel better and spent a few days at 10 before dropping to 7.5), the biggest change has been my mood. I.am.so.grouchy. At one point my mom asked how it was going and when I said I was over this week (complete with a few choice words), she asked if it was better if she was half a world away. Yes. Yes, it was. It didn't help that it was one of those weeks where all the little things were going wrong - a leak that put my air con out of commission for four days and a mess to clean up after multiple service calls and a cleaner who then canceled, forgotten meals and on and on.

By the time Thursday rolled around, I was toast. I still am. Crabby and irritable and doing my best to control it even though my best doesn't appear to be half as good as I need it. Compounding that is the exhaustion. I'm sleeping but I am so.very.tired. My body is fighting so hard against me, against the medicine, and to heal that I am weary. Bone crushingly, battle fatigued weary. I want my friends and family around and I want to be left alone. I want to sleep. As a bonus, on methotrexate nights, I appear to be having some additional insomnia. On the plus, I'm not up nauseous all night but I just can't sleep. It doesn't help the fatigue. My newest plan is to back the mtx up a day so that my crazed day is the last day of the work week and then the exhaustion happens over the weekend. At some point I may get sick of that and choose to have weekends again but in this initial stage, it's going to take tinkering.

Overall, the face rash is slightly better to the same. The lungs are improving. The fatigue continues. And my hands still hurt and are swollen. Small steps hopefully towards finding me again.



-D

"You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery."
-unknown

Saturday, November 7, 2015 - Methotrexate, Week 1

Where have I been? It’s been a long journey since last I left you, but a good one in so many ways. Here’s the skinny:

I moved from Little Rock, AR to Chicago, IL for a job at Lurie Children’s Hospital. I worked with children with heart concerns, learned a lot, and shared some good memories with a really great child life and psychosocial team. I learned how to commute by bicycle whilst there, doing 7.5 miles to and from work plus errands. It was a fantastic way to learn the city! Then an opportunity came to work in Doha, Qatar and I moved halfway around the globe, cats in tow, to start on my next adventure. I’ve been here about 10 months and I really love living here most days. I’m adapting to the heat, have gotten to camp in the desert, go on safari in Kenya, and make some wonderful friends.

Healthwise, things were really going well. After a couple of rocky years in Arkansas, the lupus began to calm after a bout with lupus nephritis necessitated beginning azathioprine and steriods (the latter of which were weaned). I’ve added some diagnoses to my collection, so in addition to lupus, I also sleep apnea as a prominent feature in my life. After talking with the doctor about being so tired all the time and not being able to lose weight, she sent me for a sleep study and it turns out my small airway was not staying open. It took months to get the right combination for CPAP but then things started happening. Because I was sleeping better, my body was regulating hormones correctly and that helped with the weight. Because I was finally resting, my body was able to heal a bit more and while the lupus still had it’s ups and downs, the combination of stabilizing on lupus meds plus actual rest meant I felt more like my old self. And that gave me the confidence to move. I was as active as I could be before, but then, with lots of support from my personal and medical teams, I trained. In 2013, I crossed the finish line at Ironman 70.3 Augusta. I did it again in 2014 at Austin. And then I moved to Doha.

I wasn’t here long when the stress of moving plus my body acclimating to the same regimen of meds sent me into a flare. While my health expat friends were learning their way around the city, I quietly went to one of the clinics and explained what was going on. From there, I was referred to a rheumatologist at one of the hospitals and was started on steriods. Despite many attempts to wean the steriods, it hasn’t worked and the wolf has come raging back each time. This week, I restarted the dreaded methotrexate. The goal is to knock the wolf back down and allow me some relief. Currently, most of my joints are inflamed and painful. My lungs are pleuritic, my head aches, I’m exhausted, my mouth has the lovely lupus ulcers, and my face has a clear butterfly stamped against it. When you compare bloodwork from a year ago to right now, my lymphocytes are halved and neutrophils double. C3 and C4 complement are low. This last round of weaning lead to an ER trip for chest pain (pleurisy and costochondritis, woot [boo]), a cardiology consult, two missed days of work, and several lost weekends of fun. I still hurt but the increase in steriods has helped me feel a little less like a slug. I’m hoping that starting the methotrexate again will help me feel more like me again and I’m hoping that I’ll remember to start documenting it on here as well.

The current montage, including echo, ED visit, face rash and swollen joints

Monday, May 5, 2008 - Still Here

Yes, I'm still here. I'm working on an update, but I'm not quite there yet. Work-wise, things have been going well and I've celebrated my year anniversary at ACH. The kittens are big girls now (which they decided one day - no more bottle, no more afternoon nap...who says cats aren't human like?) and they, too, have celebrated their first birthday. My mom and brother have continued running and are preparing for their first marathon on May 18th. Derek was accepted into graduate school - to the University of Manchester in England, no less. How proud am I?!?! Dad continues his work and him and my mother have settled into life in Chicago, as too has Tiger.

And me? I'm hanging in. I get out occasionally, but not as much as I'd like. This disease continues to zap my energy. I've finally stopped spilling protein as of February and the transition to a new rhuemy has brought with it a new prescription for a med to help me sleep at night with less pain in hopes that maybe I'll get some energy back. I'm fairly convinced one of the side effects must be increased emotions, because mine have been on edge as of late.

I'm sure that some of it comes from the frustration of life day in and day out with a disease that zaps my strength and a job that I love that keeps me far from loved ones and the various support systems I worked so very hard to create. Little Rock is much like St. Louis and some of the other places I have lived - great for families, but difficult for young adults who are no longer children, but who aren't married yet. The goal is that the new medicine helps with my sleep, which in turn helps with my energy, which allows me to get out more and do more and create those supports here.

Right now, some of the most promising news is that I'm back in the pool. I've joined the local Y and have been swimming 2-4 times a week for most of the weeks. And I've gotten fairly geeked out...I have an iPod nano named Nemo that I swim with, thanks to h2oaudio. It works and I love it.

So I continue to move forward. I'll keep working on that entry. With luck, hope, and a few spoons, I'll be back before another half of a year passes. I think of you all often and I apologize for my absence. Those who come here, who support me, you get me through. And so we move forward again. Still here.

Love,
Deirdre

"Big Girl" Emma still loves the computer...here she is attempting to mouse hunt.


"You've got a lot of choices. If getting out of bed in the morning is a chore and you're not smiling on a regular basis, try another choice."
-Steven D. Woodhull

Monday, December 17, 2007 – Road Trip Extraordinaire

And so we packed it all in, coolers, clothes, kittens and all and headed for the open road. Three hours later, Emma had not stopped meowing and I was tired for the night (I had, after all, worked a full day at ACH), so we stopped at a hotel where I snuck in the girls.


Hotel rooms are fun to explore!


And a little scary, too…

The next morning we were back on the road at 6:30am (my mom was scarred we’d hit bad weather and wanted us in front of it). 7 hours later, we arrived in Chicago. For the entire 10 hour trek, Emma stops meowing for 45 minutes. Kitty downers will be required for all who plan to return home or we won’t be making it back alive.

Thanksgiving day dawns snowy and dreary. But dedicated and fun-loving people we are, the entire group of us heads out to the Chicago Turkey Trot. I was in charge of Morgan and pictures and fun was had by all, despite how some of the pictures appear! :cP


Victory Boy Crosses the Finish


The jolly runners


Adam & Amanda coming down the home stretch


Mom, dad, and grandpa finishing the race


Morgan and Derek running the kid’s fun run


Turkey Trot Champions

It wasn’t long after we got home that the stomach flu came to visit and soon we were down my mom and Amanda who were paying homage to the pocelin gods. That left me, my aunt, and my brother to cook. Let me mention that my parents’ new place it beautiful, wonderful, amazing. However, it is an interesting challenge to cook Thanksgiving dinner for 10 (13 if you count the cats) in a kitchen you’ve seen for the first time 12 hours prior. So we cranked up the tunes, scavenged the kitchen, and got more than a bit giggly.


Morgan enjoying some Grandpa time


Who gave that woman a knife??!!

The aftermath:


Turkey/Stomach flu coma


See description above

We took in some sightseeing before Aunt Lisa and her clan headed out, including a stop at the beach. In November. In Chicago. And, yes, it was cold.

The Girls at the Lake

Once everyone left, it was me, my parents and the cats for a week while I took an infant massage certification course at a Chicago Hospital. It’s a new program we hope to bring to the NICU in the near future and this first step just happened to be three L stops from my parents the week after Thanksgiving…am I lucky or what? With mom at home all day with the grandkitties, she found various ways to amuse herself and them and, of course, spoiled them rotten, including getting new holiday décor.


Emma was so not excited when Grandma dressed her up


Tiger less so…

And so we headed back to LR…reluctantly, as we enjoyed our time, but home nonetheless. This now being the Christmas season, we decorated. I took pictures because it looks nothing like this now.


Our Christmas Tree

Now our tree only has ornaments, candles, and garland on the top half. The decorations from the bottom half, along with the tree skirt, are scattered around the apartment. Such fun, I tell you…


Decorated for Christmas

May your Christmas season bring you wonder. May your wonders never cease.

Peace,
Deirdre

"May your stuffing be tasty
May your turkey plump,
May your potatoes and gravy
Have nary a lump.
May your yams be delicious
And your pies take the prize,
And may your Thanksgiving dinner
Stay off your thighs!"
~Author Unknown

Monday, October 8, 2007 – The Five Stages

I am finally ready to write. I am finally ready to not be angry. Angry at this job that I love that has taken me so far from my family. Angry at this body that has left me so tired, I don’t have the energy to make new friends. Angry at the date that marked one year – how did we get here? Angry at this disease that is finally taking my kidneys with it and has an official name. Just angry. I’m doing better now. Getting to the point where I can talk about all that has been going on. Don’t get me wrong – it hasn’t been that catastrophic…just hard to think through. Let me start where I left off.

Wednesday, July 4, 2007

I have been blessed these last years – Independence Day in NYC or DC, always with family or friends. This year, on my own in a new city, I chose to work during much of the day. That way I could save my precious time off for other matters and it would distract me for one of the first days I was truly homesick. By the time I got home that evening, it was about time for the fireworks to start on the east coast. My brother, celebrating his first 4th in DC, called to let me know how amazing it was. As we were talking, the fireworks there began. He watched live while I watched on TV. And together we shared the show. It was one of the most amazing 4th’s I’ve had. That 45 minutes, we talked, we laughed, we cried, but mostly we just shared. The marvels of modern technology.

August 6, 2007

I meet my new rheumatologist for the first time, who patiently listens to my story, takes 14 vials of blood (I apparently set some kind of record at the outpatient lab [which must not handle hem/onc’ers]), and promises to call. I wasn’t feeling so great, so she offered steroids, which I declined with less than a modicum of tact.

August 10, 2007

I hear back from my rheumatologist. The test results are in. Protein is spilling into my urine. My ANA came back at 1:320 homozygous – positive for lupus. The answer to the question “what now?” becomes imuran (azthioprine) and prednisone. Chemo and steroids. Granted, it’s an old chemo and mostly it’s used for immunosuppresion following kidney transplant and it’s light steroids, but it’s chemo and steroids nonetheless. For the first time since I first became sick, a doctor calls this disease lupus. Not “the disease that behaves like lupus and some others,” not “arthritis that may become lupus,” but “lupus.” It is back. It is real. Enter anger.

I have been doing so well. And I knew it was going to come back. I knew. It’s the nature of the disease. But for the first time, a doctor who meets me, who doesn’t have all my records in front of her, sees me once, does her tests and calls it lupus and starts me on lupus drugs. I saved the message on my answering machine for two months because I didn’t believe it at first.

I have sought for years to have a definitive name. I have called this lupus for awhile because I know what the total of all my tests, experiences, and symptoms adds up to. But to hear it from a professional in the field – it just changed things. It made it hard and real. After ten years of denial, it seems as though I finally moved into anger.

August 20, 2007

I return to my PCP for follow up. She’s not happy that my period hasn’t returned since March. She prescribes something in attempt to scare my body into performing, apparently the threat of which was enough. Ultrasounds follow on September 24th. Awaiting the results.

September 5, 2007

It has been one year. To paraphrase RENT – how did we get here…how the hell…

And so we made it. And survived. And began to thrive. Somehow. It was hard. I can’t imagine how much harder it was for my aunt and cousins. But year one is complete. And how we still miss him…

September 21, 2007

Early morning I pile the girls into the car and we got the vet for a check-up and shots. Emma weighs in at 8.5 lbs and Ella at 7.5 lbs. Provided they continue to grow at an appropriate rate, we are facing down our last can of kitten formula. Ella should finish it off sometime between Thanksgiving and Christmas and Emma has been off of it for awhile. Emma must continue the lysine, vitamin and hairball medicine (she’s my groomer and without every other day hairball meds, she pukes like a champ on day three). Emma’s getting “thick” again, signaling another flare of her kitty herpes respiratory virus – so we up the lysine and begin with the saline nose drops and suction. The vet aggress with me that Ella’s falling off the TV while sleeping is likely due to her having deep kitty dreams, twitching and falling, not because she’s having seizures or the like. Both girls are declared free of parasites and given their rabies, leukemia, and FVRCP vaccines.

My mommy arrives!! She catches a cab from Little Rock National Airport to the hospital. It is so good to see what’s left of her – she’s lost so much weight it was like hugging air…but d@mn, does she look GOOD! I take her on a tour of the place, proudly showing off this hospital I am so humbled to work at, including the NICU. It was a crazy day at the hospital, so after a short time and a few introductions, she takes the rockin’ green minivan and heads home. She picks me up when I am done for the day and we head to Moe’s for dinner. Those steroids I’ve been on? Yeah, for those wondering, the prednisone craving this time is cheese. Anything cheese. Cheese pizza. String cheese. Especially – cheese quesadillas from Moe’s. With chips. And salsa. The people who work there and I recognize each other. As the one said to me, “don’t worry, we love our regulars.” Oy.

September 22, 2007

Mom and I have had a couple of great days together. Mostly, Mom’s been painting – finishing up on what we started when I first moved in (and boy does Ella love it – ladder and all).


Ella "helping"

She’s too good to me. I confess that I did not pick up a paintbrush once, though I helped with other things, like putting up new mini-blinds. Part of it is that she paints while I’m at work, but much of it is that I am simply too tired to help. I nap during the day. I’m drained. While the new lupus meds are helping and I’m not as bad as I was, I still have the fatigue. My body is fighting so hard against the lupus and against me that I have energy for little outside work. As excited and happy as I am to have mom here, it is equally hard and depressing – I just don’t have the energy. It’s like the time I went waterskiing after a flare – I could barely get up before letting go and going down. Even getting the skis on was too much. There are days I hate this disease and what it does, what it takes so freely.

Tonight we head to “It Happened in Little Rock”, the Legacy Project at the The Rep in honor of the 50th anniversary of the integration of Central High School. The show is amazing. The cast consists of 10 actors – one who is a reporter and the others whose characters constantly change. They morph into different ages, personalities, ethnicities, socioeconomic level, and race, not to mention moving from present to varying pasts. The songs are beautiful and poetic. It makes me long for Broadway and so proud of what is available locally. Afterwards, we take tour to the monument to the Nine at the capitol and go by Central High.


Monument to the Little Rock 9


State Capitol Building

September 24, 2007

Abdominal/pelvic ultrasound. On the screen it says “amenorrhea/family history of ovarian cancer.” I do not have to ask what they are looking for. The scan is clear. Thank God. Unfortunately, there is no concrete explanation of my missing period. Maybe.it’s.just.the.lupus. The ever-elusive diagnosis now plays catch all for the things going wrong inside me. Odd.

September 25, 2007

Take my mommy back to the airport. Sniff. But it sure was great to see her. And the cats enjoyed it. So all is good. Our big major earth-shattering road trip to the Windy City is T-minus 57 days and counting.

This day also happens to be the 50th anniversary of the integration of Central High School in Little Rock. How truly lucky am I to be in so many places when historic things are occurring or being remembered?

September 29, 2007

Mom and Derek run the Susan G. Komen Race for the Cure in Chicago. Mom takes 5th (yes – FIFTH) in her age group, clocking in around 28 minutes for the 5k. How proud am I? (And amazed and, truth be told, a little jealous…but mostly – so, so, SO DAMN PROUD)

October 1, 2007

Dad turns…umm…I’m pretty sure he doesn’t want me to say. But Da-aad…I’m 24…so that makes you??? Meeheehee. Happy Birthday Dad. Sorry I forgot to call.

October 2, 2007

Call Dad. Wish him a happy birthday. Kick self in pants. Oops.

October 4, 2007

Home from work sick. No voice. Cold from hell that’s lasted for a week already is settling into my lungs. Sound rather like a seal barking. I have taken to sleeping on my couch where it is easier to prop up enough pillows so that I can sleep almost sitting. Adamantly refusing to call the doctor, because really – I don’t have the time or energy. But I will call, to make my mommy (and concerned co-workers) happy.

Currently

- Going for next CBC to make sure we are knocking down my immune system to just the right level
- Finally picking up my new ear mold for my hearing aid on Wednesday – master has given Dobby ears!
- Waiting for neurology and GI consults…it takes awhile to schedule these

I thank you, dear reader, if you have stuck with me both through the wait for this entry and for making it all the way to the end of this novel. In Word(TM), it was 7 pages. I guess I did have a lot bottled up. For those worried about the pessimistic and negative tone of this entry, please remember that it had to come out somewhere and I have been trying so hard to hold on and be happy and find the good that I finally needed to get some of this icky stuff off my chest. And you know what…I feel better now. Thank you for listening. I’ll return you to your regularly scheduled happy Deirdre shortly. She really is still in here.

Please know also that rarely does a day go by that I do not think of all of you, pray for you, and thank God for each of you who follow my journey. It really does a world of good to know just how much support is out there, even though I have not been tapping it during the past months. There is a guestbook entry from Miri who says she has followed my journey since undergrad. It floors me that people would stick by me that long - I don't even stay in one place that long! But I assure you, Miri, that I appreciate the support. Just as I do each entry from Eva - all the way from Belgium, who even took the time to email me. What did I ever do to earn such compassion? How truly blessed...how truly blessed. Please don't give up on me during the absences.

Love, the still-standing,
Deirdre

“One small year
It's been an eternity
It's taken all of me to get here
The hands of time
They pushed my down the street
They swept me of my feet to this place
And I don't know my face
Now all through the night I can pretend
The morning will make me whole again
Then everyday I can begin
To wait for the night again
One more tune
That will never be done
It's just another one for the moon
For the days in the ruin
Just today I woke up feeling fine
Like the world was mine
I was clean
And it was a dream
Where out of the blue came you and me
The Wizard of Oz has set us free
You let me float you to your feet
Just like you believed in me
It's like you believed
One small year
I wonder where I've gone
It shouldn't seem so long or so weird
And I was always here
It's just one small year”
-Shawn Colvin’s “One Small Year”

Tuesday, July 3, 2007 – Falling Behind, Catching Up

That this page has gotten so far behind has actually kept me from updating. I have so many partial entries that I need to finish that it keeps me from sitting down and doing the updating I so desperately want to do. This website means so much to me – it is a way to update those I love and care about that are spread across this country and world. It is my therapy – my way to process that which rumbles around my heart and my head. It keeps me sane. But when it comes down to it, I have exactly enough energy to get myself through work and then drag my sorry behind back home. My kittens, who add so much joy to my life, get any remaining energy, which usually just means curling up on the couch. I’m happy, but I’m worn down. My body is showing the signs of 4 months of non-stop craziness. So I’m working on it. I’ll get there. Don’t give up on me. Keep reaching out. You all remain in my thoughts and prayers. Please keep me in yours.

Love,
Deirdre

“Many of the great achievements of the world were accomplished by tired and discouraged men who kept on working.”
-unknown


Monday, June 25, 2007 – The 90 Day Curse

It has always taken longer for things to hit me. I am ten years out from diagnosis and I only just now am beginning to realize that this is lifelong. I graduated over a year ago and it’s just now starting to seem real. For most, it takes about ninety days for the “oh shit” factor to hit after starting something new. The first month, you are all emotion and motion – going through what you have to in order to get done what you must. It takes another of couple to realize just what you’ve gotten yourself into. It is this weekend that I am finally realizing that I am here in Little Rock to stay. It is this weekend that I am homesick. I miss my mom, my dad, my brother, and Tiger like crazy. But mostly, I miss those girls and my aunt.

Maybe it’s because this is Hell Week. Anniversary, grandma’s birthday, and my uncle’s birthday – his 50th, nonetheless – all within days of each other. I feel useless so far away. I don’t feel well this weekend physically and when added into how I feel emotionally, I don’t even want to get out of bed. It hurts to be separated. It’s why I left Boston.

I’m four months into my work here. That leaves me a minimum of 16 left, because I promised myself two years. It’s almost too much to think about. But I find some odd comfort in knowing I must be here for a reason, even if it isn’t one I can understand right now. I need to be here now, just as my aunt and cousins must be in Atlanta. We must learn to do this on our own.

In the NICU, 90 days is long enough for a 23 week neonate to grow to a 35 week baby. Do you know what looks like? It’s going from footprints the size of a quarter to footprints the size of a small fist. In a world where days, hours, minutes, and moments matter, watching babies grow is a blessing to behold because not every baby that comes in goes home and nobody who comes in leaves the same. Such as it is with much of life. I am here for a reason. In no small part, that reason is to help these families and babies. Somehow, that keeps me going, even in those painful moments of missing those whom I hold dearest. Somehow, it will all work out. All will be well.

Struggling,
Deirdre

“That all will be well
Even though sometimes this is hard to tell
And the fight is just as frustrating as hell
All will be well…

And all will be well
Even after all the promises you've broken to yourself
All will be well
You can ask me how but only time will tell

You got to keep it up
And don't give up
And chase your dreams
And you will find
All in time”
The Gabe Dixon Band, “All Will Be Well”


Wednesday, June 6, 2007 – Joy

Tonight, I am so happy. Nothing amazingly wonderful happened, but it has been a good day and in my heart tonight, I feel joy. Real joy – the kind that has been missing for some time. I am happy. I am sitting on my couch, listening to my current favorite song (If I Stand by Rich Mullins), Ella curled up by my side. I just got out of the shower after cleaning my apartment. I’m looking around satisfied because I didn’t think I’d have the energy to clean anytime soon, but I did tonight. It was a good day at work, with some good news for my babies, a couple of successful surgeries, and a very happy baby on a wagon ride around the unit. I’m settling down for the night with the leftover chips from lunch, ready to take my night meds and praising God that I feel like I might just make it through the rest of this week without too many battle wounds. I’ve been worried that I’m heading towards a flare recently because I’ve been so d*mn tired and I’ve been collecting all my comfort objects near – a sign I typically realize after it happens that makes me go “hmm, better watch myself.” Tonight though, it feels like maybe that won’t be the case just yet. I’m so close to my 90 days at work and then I’ll be a “real” employee who can take vacation and sick leave and everything. :cP I think that will take a big chunk of the pressure off my shoulders and maybe I’ll breathe a bit easier. Less stress is always good. Tonight though, I’m just going to enjoy – my mood, my apartment, my chips and salsa, NCIS (my new addiction), and my cats.

Bless us all.

Love,
Deirdre

“So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home”
-Rich Mullins, “If I Stand”


Saturday, April 28, 2007 – April Awareness

I worked in CASA for a year – the Child Abuse/Sexual Assault team at Metropolitan Hospital Center – a city hospital located in Spanish Harlem in New York City. I saw and heard a lot during my time there – so many stories that I don’t think I’ll ever forget. It’s been almost a year since I worked there and tonight in the ACH ER, I worked again in Child Abuse/Sexual Assault by helping a young girl through the rape kit procedure. It’s four thirty in the morning. We finished about three hours ago and I still can’t calm my mind down.

It’s not the first time I have seen or been part of this process. Given what I do, it will likely not be the last. That does not ever make it easy. After each case it takes me awhile to “come down” – to unwind and focus on other things without my mind reeling back over what I experienced. I know that I was a part of was but one small part of what will happen. But I know that I was present and involved in something that will forever change this girl’s life.

The exam was consistent with penetration. There were fluids present. This girl was assaulted. And if that wasn’t bad enough, her mom commented at one point that the exam has changed so much since she went through it, also as a child. Second generation.

My heart aches. The cycle continues. I wish I could do more. My mind races with the things I could have done better or different to make this just a bit smoother for the family. Mostly I feel helpless. That this continues to happen. That at a children’s hospital, we are prepared and experienced to perform such exams. That I am a part of this cycle in so many ways. No one should go through this. Not ever. And certainly not children. But then no one said life was fair.

In the 2.5 minutes it probably took you to read and reflect on this entry, another person in the US was sexually assaulted.

Questioning,
Deirdre

"Why can we not change the past
Or right the wrongs that forever last
Painful memories cloud my mind
It hurt to be naive that time
Raped of mind and innocence lost
I had no say in what it cost
Dark dreams await my sleep
It hurts so bad I start to weep
I'm alone with my pain
Am I able to stay sane?"
-Skie


Thursday, April 26, 2007 – The Merry Go Round

In Atlanta my brother was sick with a spring cold. He ever so nicely passed it off to me. Three weeks later, I am still running fevers and feeling pretty crappy. I just missed my second day of work over it. And I feel awful. I’ve been awake for all of two hours today. The rest of the time I’ve been asleep. After feeling so good for so long, it’s hard and scary to go back to feeling like this. Small things like this latest infection are what typically leads to flares and relapses. I don’t think I can handle that.

I reread part of my journal recently…from when I was so sick over the summer at my internship with pneumonia that hung around with me for about two months. I had forgotten that I was supposed to see a pulmonologist because we thought it might be a new manifestation of lupus – a scary proposition at any point…new symptoms never mean anything good. I promised the doctor I saw that I’d go after my internship. Then my uncle died and everything changed. And as is true so often with lupus, things got better for a while and I simply forgot. Now I am praying that isn’t repeating itself. I’m praying that its just a cold and like it is so often, I’m simply having trouble kicking it because my body doesn’t handle infections well.

That’s the problem with this merry-go-round. There’s no telling when a cold is just a cold. So I end up worrying about each and every one. Working at the hospital, I see so many struggling with so much more that my stupid cold shouldn’t even register as a worry. But I know what can happen and that leaves me quaking in my boots. It seems so stupid to spend time on this. It’s a cold, not cancer.

Today, however, I choose to sleep and to acknowledge that which has been racing through my head. I’ve been so forgetful lately. I think it’s because I haven’t spent the time I need to process what is happening in my life. My brain is on such overload that it can’t remember what I’m supposed to be doing. Each time I’m able to journal helps clear my mind to focus on what’s important, especially in my work. So much planning and development to do right now that I need my head to work as it should.

I love what I do. I’ve been spending so much more time in the NICU, working with my babies. I see so much everyday – babies struggling to grow and to live and their families walking this path with them. I am humbled so often by these tiny miracles – many of whom start life at 23 and 24 weeks gestation. I see God everyday at work. I feel blessed to be a part of it, even if I am terrified of my own body.

Prayers welcomed.

Love,
Deirdre

PS: The kittens finally put on enough weight to safely undergo anesthesia, so they were spayed. They made it through just fine and are contentedly recovering at home.


Ella


Emma

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."
- Ambrose Redmoon


Monday, April 9, 2007 – And so we go…

Easter has come and gone. I’m on the flight back to Little Rock from my first trip home to Atlanta. It was great to see everyone – my aunt and cousins, my parents and brother, and the Sheltons. It felt like no time had passed at all – things just fell back into place. At the same time, there are so many changes that the five weeks since I left have seemed an eternity. Morgan’s outgrown her clothes, Katie speaks more than ever, and Kelsey is finally speaking her thoughts and verbalizing some of what is going in through that mind of hers. When I left she both said that she didn’t want me to go and that she loved, without any prompting or asking. It’s a first between us – the spoken words to go with the unspoken actions and bond that is there.

The weekend was, of course, insane. From the time I arrived until the moment I arrived breathlessly at my gate, wondering if I’d missed the flight, we ran. Present shopping, egg dying, food preparing, Easter and birthday celebrating – we hardly slept. It was all amazing. So good to be back – how I missed my family!

I love my work at ACH. I love the people there. But it doesn’t stop me from wishing that ACH, it’s people, my apartment, and my cats were all in Atlanta. Ours not to question why…

Tomorrow is Morgan’s 5th birthday. We celebrated this past weekend with cake, gifts and family. She is getting so big (big, mind you…not old…just ask her). Each move forward, each time that we are reminded of the grief process and where we are reminds us that although it is a process and we are successful in moving through it, this movement forward means we are further from my uncle – when he was alive and even from the days immediately after his death, when our grief was still so raw. And although the progression brings comfort, it also brings pain, because it separates, just a bit more from him.

This is becoming especially real for my aunt, particularly as she watches Kelsey finally becoming at peace with the process of grief. Now that Kelsey realizes that it is a process and not one that can be ignored and one that can be discussed, shared, and experienced, she has relaxed.

She hasn’t been at this point previously and while this peace brings comfort to us all, we also realize that Kelsey has lived in and around our grief long enough to begin working through hers in a positive way. It is this that allowed her to vocalize those thoughts about my departure. It brings us full circle – we move forward as I go back. It is as it should be. A routine is forming for me and for my aunt and cousins. We have made the transition.

We are stronger once again, even though we don’t want to be. We seek comfort where we can and rejoice in the fact that Lent is over, that Christ has again risen, and that we continue to move in the only direction we know how.
Happy Easter.

Luv,
Deirdre

"Sometimes even to live is an act of courage."
- Lucius Annaeus Seneca, Letters to Lucilius


Tuesday, April 3, 2007 – Adulthood

It is at night that my mind wanders. Back at work, I realize that to some extent, my life hasn’t changed much off chemo. I spent my first day off sleeping till early afternoon. I stay awake 5-7 hours and go back to sleep for another 12-14. Then on Sunday I have some energy left to do a few of the other things required – house cleaning, grocery shopping, etc. I tell myself that as I adjust, it will get easier, but truth is, history tells me it won’t. And so I struggle with truly listening to my body and when it tells me to rest versus pushing through it like I always have. Of course, the bad part of writing at night is that it brings out the darkest of thoughts – the sad ones that match the blue of the midnight sky. I should remember to get on here earlier, when I smile coming home from work, greeted by two tiny pink noses, excited to see me.

I can hardly explain the effect these two kittens have had on my life – they make me excited to come home. They give me something to worry over, care for, and love beyond me. They provide such companionship and for once, I’m not so lonely living here on my own. Studies have shown that having an animal improves both quality and quantity of life. I believed that before, but now I truly understand it. My mom calls them the “grandkitties”. They are like her grandchildren…after all, they are like my children. For the first time in my life, I feel adult. I feel settled. I feel like I have a true home of my own. There is paint on the walls, pictures hung up, a bedroom, living room, dining room and kitchen. There is something to come home to. When did this happen? When did I grow up? And as scary as it is, when did I learn to love it? Because I do. I am happy. And that means the world.

Prayers welcomed.

Love,
The Grown-Up Deirdre

“He swings from the chandelier, he paws my peanut butter, and he knocks over my drink in the most unfortunate places in the house - but I still love him like crazy. It's like a hairball in my heart.”
- Audra Foveo-Alba


Wednesday, March 28, 2007 – The Manual

I think so often of my time in Atlanta. I miss my family more than words can say. And in times when I am in doubt over how much help I provided, I think, believe it or not, of the Bible. “When I was thirsty, you gave me drink…” When we were sad, we brought comfort to each other. We lived the words of God everyday, no matter how hard it was or how often we questioned His plans. And now, when I miss them so, it brings me just a bit of comfort.

I’m lying here looking at Emma, curled up on my pillow. She’s purring herself to sleep. Ella is curled at my feet. I’m laying on my couch curled up in blankets tenderly made for me by those I love. How truly blessed am I…

Peace,
Deirdre

"‘For I was hungry and you gave me food, I was thirsty and you gave me drink, a stranger and you welcomed me, naked and you clothed me, ill and you cared for me, in prison and you visited me.' Then the righteous will answer him and say, 'Lord, when did we see you hungry and feed you, or thirsty and give you drink? When did we see you a stranger and welcome you, or naked and clothe you? When did we see you ill or in prison, and visit you?’ And the king will say to them in reply, 'Amen, I say to you, whatever you did for one of these brothers of mine, you did for me.'”
-Matthew 25:35-40


Thursday, March 22, 2007 – Bouncin’ Round My Head

I keep thinking about my last night at my aunt’s. It was so hard knowing I was leaving. I chose to sleep on the couch as I get more rest there. I made the bed that had been mine for the past six months back into its regular sheets and whatnot and retreated downstairs. My aunt was out, so it was just the girls and I. Eventually Kelsey came down saying she couldn’t sleep. It took awhile to get it out of her, but she couldn’t sleep and had come to find me in my room and saw the bed. That just shook her up worse. We had a good cry and talk about my leaving, why it had to happen and how we’d get through it. My heart just breaks.

When I’m not frantically busy, it hurts thinking of all the moments I am missing with them. Not the big things, but the little, ordinary, day-to-day moments of life that have made up our world since September 5th. I wish that I didn’t have to leave. Thinking of being away for two years makes my heart physically hurt just thinking of all I will miss. I have a better appreciation for what soldiers go through – knowing their deployment will separate them from their families.

There’s a reason I moved from Boston to NYC to finish school – I needed to be nearer to my family. That’s what makes this move to LR so hard in many respects. I am a family girl – I have always been close to those who make up my family. Moving so much meant “home” never equated the four walls that contained us, but the people contained within.

Separation is like losing my home, my grounding, my base. I have left my base before. I have survived on my own, thrived on my own. I have proved that I can do it. But I’m tired of proving it and I know how precious it is – I don’t need to prove it again to rediscover the blessing of family. I want them close. I want to suck the marrow out of the moments we have together and not miss a single one. I guess that makes me homesick.

Sorry for the whining. I didn’t mean to go off on such a tangent, but my mind just keeps coming back to that exchange with Kelsey and it must be bouncing around there for a reason. With this as my therapy, I needed to kick it around a bit, figure out why it is haunting me so. I guess it’s just the finality of the separation finally coming into focus for me.

Prayers welcomed.

Love,
Deirdre

“Love one another, but make not a bond of love: Let it rather be a moving sea between the shores of your souls”
-Kahlil Gibran


Sunday, March 11, 2007 – The Precipice

They’re Here!!! My new kittens came home on Sunday, March 4 and we are quickly bonding. It’s hard to imagine life before these balls of fluff.

It dawns on me that I should back up and offer a couple of explanations. Obviously on my apartment hunting trip, I found a place to live. I’ve got a great one bedroom, first floor apartment about 10-15 minutes from the hospital. I also looked into rescue organizations before my trip and found one that specializes in rescuing cats and worked with the wonderful people at FuRR to find two cats that got along well with each other and me. While visiting them at Petsmart, where they were holding their adoption event, I met two beautiful kittens with whom I immediately fell in love. Many attempts later, they have been named Ella (the black tabby) and Emma (the grey torti). Other considerations were Kelsey and Morgan, Hugs and Kisses, Thelma and Louis, and Lilo and Stitch. Ella is my jail-breaker – she’s constantly naughty, exploring, and finding herself in impossible situations. Emma is my observer – she’s just as curious, but she’s going to make sure she can get back out of something before she gets into it.

While Derek was here, she spent much of his time kitten-proofing the apartment – child locks, baby gate, getting the food and litter box set up. He was supposed to go with me to pick them up, but they weren’t quite ready in time. They are essentially, in human terms, failure-to-thrive kittens and were supposed to be spayed last weekend. However, they were still too little and couldn’t be. The foster mom didn’t want me to take them initially because they weren’t fixed, but I promised her I’d get it taken care of and that this would be a better week to take them as I was off work and could spend more time with them. So we’re on the schedule for next month and we’ll work on gaining weight in the meantime.

Both kittens have a bit of a respiratory infection they are working on getting over, but they appear to be on the mend. We’ll keep an eye on it. Meanwhile, they are up to usual kitten antics. They hate their baby gate. Starting the first night they didn’t like to be separated from me and threw a fit. Since I’m still on my couch as my bed is broken and the kittens are limited to the living area unless I’m gone and then they stay in the kitchen, they are sleeping with me on the couch. What can I say – I’m a softie.

Here are some pics of our first week together:


Coming Home - a curious Ella peers out of the kitty carrier


Checking out the new litter box - a bathroom and a toy all in one!


First collar - not so happy about this


A tired Emma settles in


We are not happy when mommy leaves us. We spend much time meow-ing at our baby gate to end this separation. Mommy finally gave up and let us sleep with her after about an hour of this and we have not slept alone since!


We are much happier sleeping with Mommy on the couch.


It's hard work to be 3 months old!


Helping Grandpa fix Mommy's bed so that someday soon we can sleep on the bed instead of the couch.


Ella being naughty. She's convinced this is her place to lay.

Tonight, we snuggle again. Tomorrow, I truly begin my new life. My first day of work. It’s terrifying, but exciting too. It’s the hospital wide orientation, so I’m not nervous as I might be, but it’s still a bit scary. Tuesday I have another day of hospital orientation and then I start departmental orientation with Child Life. It’s going to be exciting – I’ve seen my schedule and there lots to do. My schedule is going to change constantly during orientation, so it’ll be crazy trying to keep up or contact me. I’m looking forward to settling into a routine at some point, but first things first. Wish me luck – this is a big cliff and I’m standing on the precipice…I’ll need my wings now more than ever.

Prayers welcomed.

Luv,
Deirdre

“For many people a job is more than an income - it's an important part of who we are. So a career transition of any sort is one of the most unsettling experiences you can face in your life.”
-Paul Clitheroe


Thursday, March 1, 2007 – Nysa

And so it was with many hugs and more tears that I got in my uncle’s van, drove down the driveway, and left my aunt and cousins in Atlanta while heading for Little Rock by way of Memphis. We cried so hard. It was, far and away, one of *the* hardest things I’ve ever had to do. I stopped at the entrance of the neighborhood and collected myself before I headed out. I text messaged my close family and friends saying that I’d hit the road, but not to call because I couldn’t talk. I could only cry. I put on the sound track to “Wicked” and listened to it the whole way to Memphis, then from Memphis to Little Rock the next day, and pretty much the entire first week. Something about it was comforting and I sought comfort anywhere I could find it. I know my aunt and cousins were doing the same.

Before I left Atlanta, we had lots of lasts and memory making things to do. The biggest involved a doll of mine. As a senior in high school my parents gave me a doll that was meant as a “last doll.” I have since become attached to her much like a teddy bear and sleep with her like most would a bear. She’s got multiple purposes – she’s comforting, she’s also weighted just right so that she helps heat or ice packs fit just right on my chest to help with the costochondritis, she’s also one of my teaching dolls for Child Life when I need her to be. When I went to Atlanta, I brought her with me. I knew I’d need comfort. I never planned on the girls falling in love with her too. But they did. She’s a Lee Middleton doll, similar to the Newborn Nursery dolls they now have out (she’s an older version). After I found out about this, I decided that I’d love to find a way get them each a doll like that before I left. I talked it over with my aunt and we made it happen.

About a week before I left, we took the girls to the mall. We didn’t tell them where we were going or why. On the way there, they figured out that it was the mall where we were headed, but still didn’t know why. When we walked into the part of the store where the “nursery” was, their little mouths just fell open. By the time my aunt walked up, the girls were giddy with excitement. It was lots of smiles, hugs, and thinking but eventually each girl adopted a doll. With a promise to return when the “Nurse” was in for newborn check-ups, we headed out, each girl happily holding their new baby. We went back a day or so later and had the babies “checked-out” (including mine, as Morgan wanted mine to go too :cP). It was absolutely worth it.


Kelsey and Morgan with their new babies inside the nursery


At the Newborn Nursery

We also took an afternoon to remember our Disney Cruise and make another keepsake. With the photo of us girls as the ship departed, a couple of frames, and some paint, we made handprints to go with the photo so that we’d each have a copy. I hope to have my hanging up soon as it makes me smile each time I see it – both in memory of the cruise and of the day we did the handprints.

With my baby and picture safely packed in the van with the rest of my stuff, I headed out of Atlanta to meet up with my mother in Memphis and the next day we drove to Little Rock. Upon reaching my new home, we checked in and I signed the lease and we started the cleaning process. The place was pretty icky and everything associated with water leaked. I was on a very familiar, first-name basis with the handyman within 24 hours. A new dishwasher and many tweaks and fixes later, and most everything stopped leaking. We cleaned like mad women and began painting. I’ve lived with white walls pretty much since I’ve left home. I wanted a place that felt like home so when I looked for apartments, I looked for places that allowed pets and allowed painting. Many hours of elbow grease and multiple coats of paint later, things are looking pretty darn good. Today the movers came and helped me unload all my crap. Now comes the process of unpacking.


Painting My Living Room (red is a hell-ish color to paint...oy)


My "Yellow Brick Road" Bathroom (note the Windex bottle to power through yet more yuckiness)


Merry Maid Mom (to continue the tradition of naming people :cP)
Mom cleaning out more of the nastiness from the previous tenant...the place was pretty gross, but with lots of 409, soapy water, and elbow grease, we definitely made it live-able and sparkling clean.

Tomorrow I take my mother to the airport. She’s been my backbone through this and I simply could not have made it this far without her. I am so blessed to have the family I do. They are working so hard to shelter me from the hardest parts of this move. We’ve talked to Aunt Lisa and the girls several times and they sound ok, but it’s hard all around as we feel our way through this newest change. We miss each other, but we are strong and we can do this too.

I pick up my brother tomorrow as well. He returns to DC on Sunday after we pick up the kittens. I’m by myself with the girls Monday through Friday and then my dad comes for the weekend to help. Starting this Monday I also begin pre-employment stuff like my physical, getting my badge, etc. Monday, March 12 is my first day and it’s all orientation. We’ll see how it goes.

Thank you for taking this journey with me. It hasn’t been easy so far. It won’t be easy in the coming days and months. But it is a blessing nonetheless.

Nysa – Greek for a new beginning. And so it is.

Luv,
Deirdre

"Every new beginning comes from some other beginning's end."
-Seneca

February 19, 2007 – Miracles Small and Large

Kelsey’s birthday was the 9th of February. She turned 10. It took me awhile to figure out why this birthday was significant to not just here, but to me as well…something kept nagging me. I finally realized that Kelsey was born in February of 1997, the year I was fourteen and halfway through my eighth grade year of school.

It was that year that I started getting stiff while I slept and missed so much school for what was thought to be mono. It was that year that I found myself thrown into the medical world and took those first tentative steps towards recovery and understanding. It was then that my fight began.

And so when Kelsey celebrated her tenth year on the planet, I celebrated, silently, my own victory: 10 years later, I am here to tell the tale, stronger in spirit and in heart, with a focus and direction in my life that has come from so many hours in doctors offices, waiting rooms, and hospitals.

At 14, I could never picture myself beyond 23. The thought of living with lupus for 10 years seemed impossible – I couldn’t hardly think through the next hour, let alone the next ten years. That chronic meant forever hardly meant a thing to me. Looking back ten years later, I still see much of the girl terrified of each new doctor, hating each new medicine, and what the disease was doing to her body. But I also see how that girl began to grow into a woman – taking charge of her health in many of the uncommon hours. And while my milestones in life do not always mirror that of the “normal” – things like first time on prednisone, first chemo dose, first MRI, CT scan, and endoscopies – many, many do (prom, first driver’s liscense, high school graduation, college graduation, first boyfriend, breaking curfew, moving out on my own).

Did you know that in the 1960’s, only 50�f lupus patients survived four years out from diagnosis? Today, 80-90�re ten year survivors. That’s the great news. The bad news is that they don’t have stats on twenty year survivors, because I’m one of the first generations living this long.

The really good news, though? On my ten-year anniversary, the lupus gods actually gave me a treat. I saw the doctor this past week and as I am still doing ok and my honeymoon period is over as far as time off Methotrexate, I am officially off chemo now. I found myself grinning ear to ear with that one. These days, I feel pretty good. It’s easy to fool myself into thinking that this is both how is has always been and always will be. I’m trying to enjoy each moment that goes well, because somewhere in the recess of my mind, I know it won’t last.

After facing the last ten years, it’s easy to think that the next twenty, I’ll feel like this – and that’s ok by me! And while 20 may sound like not a lot to some of you (as it will put me at the ripe old age of 44), it’s a lot more than I thought I’d get (or more than I wanted on some of those bad nights) at certain points of my life. For the first time in awhile, I’m looking that far into the future and I’m smiling. So celebrate today and look hopefully towards the future I will, with a wing and a prayer that just maybe the next 10 years won’t hurt as much as the first 10 did.

Happy Birthday, Kelsey.


10 candles on the cake

And Happy Anniversary to me.

Still here,
Deirdre

“Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!

It's time to try
Defying gravity
I think I'll try
Defying gravity
And you can't pull me down!

I'm through accepting limits
'Cuz someone says they're so
Some things I cannot change
But till I try, I'll never know!

Kiss me goodbye
I'm defying gravity
And you can't pull me down:

So if you care to find me
Look to the western sky!
As someone told me lately:
‘Ev'ryone deserves the chance to fly!’”
-Elphaba, Defying Gravity in “Wicked”

February 6, 2007 – Growing Up

Such the little rascal am I. It’s taken time and effort and more time and more effort. But success is mine and on March 12, 2007, I will start at Arkansas Children’s Hospital, developing their Child Life program in NICU.

We are all a little excited and giddy that something has come through – and it’s a wonderful opportunity and a great hospital and reputation. That said, we are all more than a little sad, scared, and hating the ticking clock. At one point, I was putting Morgan to bed and she started crying about how sad she was with me leaving, so then I was crying too. Then she says, “you leaving is hard than when daddy died.” How do I respond to that? Other than to say that I don’t want to leave either and that although I tried, very hard, to find a job here in Atlanta, it just didn’t happen. So I’ll be in Little Rock for a time and then maybe try to head this way. This is going to be a very hard transition for all of us and it will hurt deeply, though close I am sure we will remain. I can’t hardly even put it into words right now, so I won’t even try.

Needless to say, my schedule is going to be a bit hectic in the upcoming weeks. For those of you trying to keep track of what state I’m in and when, here’s how things are going to be looking:

- February 11 – 13: Little Rock house hunting trip
- February 15 – 20: Jersey trip to sort out storage units
- February 25 & 26: Mom starts from Jersey with the U-Haul and I start from ATL with the van and we meet up in LR
- February 27 – March 3: Mom and I work on cleaning, painting and moving into the apartment
- March 5: First appointment at Employee Health
- March 5 – 11: Settling into LR, finishing up ARC paperwork
- March 12: First day of work and orientation

And if I’m still alive and well after all that, I’ll be in my first “real” job with a “real” paycheck and “real” benefits. So that’ll be cool…hard, but cool.

Prayers welcome.

Peace,
Deirdre

“A Mission Statement is a dense slab of words that a large organization produces when it needs to establish that its workers are not just sitting around downloading Internet porn.”
- Dave Barry


January 26, 2007 – Ordinary Time

We thought the holidays would be the hardest – and they certainly weren’t easy – but they were nothing compared to entering a New Year and trying to figure out day to day life now that the first holidays and the shock lie behind us. In Catholicism, we believe the year starts with Advent. We then have other seasons too: Christmas, Lent, Easter, Triduum, and our various holy days. When we are not in those times, we are in “Ordinary Time.” While the holidays are the highlights of the year and are special, indeed, it is this ordinary time that consumes our calendar and teaches us who we are.

In September and October, the death was so recent we were shell-shocked…we didn’t know what to do or where to turn and we focused on life moment by moment. October heralded us into the holidays – Halloween, Thanksgiving, Christmas, and New Year’s. Now the shock is less, the holidays over and we have to figure out how to live day-to-day without my uncle and that has been a challenge that none of us thought would be this hard. The girls, especially, have taken issue and are acting out in ways they hardly recognize or understand.

Morgan bullies Maggie and refuses to play nicely with her closest friend. She talks back to Aunt Lisa and I and thrashes, hits, screams, and runs like a hellion. When asked why she is behaving like this, she’ll just cry “I don’t know!” At night she cuddles into our arms and sobs about missing daddy and feeling sad and angry. Kelsey clings to us and hardly plays with her friends. She can’t and won’t sleep at night and is constantly distracted. She depressed, anxious, and refusing to talk or seek help.

So we look for ways to help everywhere we can. Morgan will be getting individual in addition to group counseling at the link. We read our children’s book on grief and anger at night and talk and cuddle through the conversations. We continue to demand good behaviour, explaining that being angry and mad is ok, but acting up to get out those feelings is not. Kelsey will, much to her dismay, return to The Link for group counseling, a mandate she argued against vigorously. Still, it seems to help her when she is around others in a similar situation and as she learns how to vocalize and work through her grief. We keep open the lines of communication and are staying in touch with those at her school.

We’re getting ready to face another first soon – the first birthday without Uncle Dave, as Kelsey turns 10 on February 9th. Grief is hard work and each day brings with it new challenges. So often, we ask for the fast forward button, to move through this most painful part into the years where just maybe it won’t hurt so much. But that isn’t possible and the only way to make it through these years is to live and experience them.

Of course, hard though this is, we have fun too. MLK Day meant a day off school for the girls, and while Aunt Lisa had to work, Amanda didn’t and her, the girls and I had a great day of playing in the park and spending some time together at home.

We took Derby with us to the park. He thought it meant time not just to play, but to get *really* dirty...


Derby in the mud...all the way in the mud... (just turn your head and picture this the right way...photobucket isn't playing nicely, boohiss)

We, of course, knew how to take care of the problem:


Derby, Amanda, and Kelsey in the creek


Back at home for some s'mores action :c)

Thanks for your patience with those oh-so-infrequent updates as of late. Things have been so hectic that we haven’t had much of a chance to breathe, focus, and reflect. Know that you all remain in our prayers and that we thank you for keeping us in yours.

Peace,
Deirdre

“Past the seeker as he prayed came the crippled and the beggar and the beaten. And seeing them... he cried, ‘Great God, how is it that a loving creator can see such things and yet do nothing about them?’ God said, ‘I did do something. I made you.’”
-Author Unknown


January 5, 2007 – When You Wish Upon a Star

And so we survived Christmas. I went home for the few days around the holiday – it had been awhile since I’d seen my family and, while we weren’t sure the house would be in livable condition, it was good to see the place still standing after the fire/flood episode. Thus, Aunt Lisa and the girls faced this first Christmas on their own. It wasn’t easy, but we all made it – and there were smiles, particularly when Kelsey found the tickets Santa brought for a New Year’s Eve Disney Cruise. We left on December 30th to drive to Orlando and stay with friends. On the 31st, we headed from Orlando to Port Canaveral and boarded the Disney “Wonder” for four days and three nights of New Year’s and Caribbean fun.

Very little can do a better description than pictures, so I’ll let a small sample of the pics from our adventure talk for me. I will say that it was amazing, from the fireworks, to the food, to the room, to simply being out at sea. It was a great break from the day to day life here in Atlanta. That said, it was hard. It was the turning of the year, the last in which Uncle Dave was alive. It forced us to confront out denial that maybe this wasn’t a bad nightmare. For my Aunt, the only other cruise she has ever been on was the one to Alaska, with my Uncle and this cruise brought back so many of those emotions. It was nice to be anonymous, but smiling families, with a mom and dad, surrounded us and it wasn’t hard to see our differences. Nothing’s easy anymore. Still, we had fun, we played hard, we made memories. And, as always, we move forward, in the only way we know how.

The Trip of a Lifetime, in pictures:


Arrival at Port Canaveral, the Disney Wonder greets us



Security everywhere, including as we get on to the ship. Morgan is less than thrilled with waiting in line.


Aboard the ship, the first order of business is the safety drill. Here Kelsey and Morgan model the latest in High Sea Fashion.


Aloha! We set sail as the Wonder takes off. For those of you who believe that those who love us never leave us, if you look behind Kelsey's head at the guy standing across the ship in the red shirt and white cap leaning against the rail by the white post, you'll find the spitting image of my uncle. Oh how we could feel him watching over us...


Time for some R&R, Disney style. Here we are swimming in the Goofy Pool while watching cartoons on the movie screen above us. Talk about awesome!


New Year's Eve Dinner


New Year's Eve Dinner


"Have you seen my genie?" asked Aladdin as he came rushing up to us...character visits are a constant thing during our days at sea...and we *love* them!


Ringing in 2007 with fireworks. Disney is the only cruise line allowed to light fireworks from their ships...and the other ships were quick to pace us to catch a glimpse, but we had the best view - and how spectacular it was!


Welcome 2007 - May we have more smiles than tears...


New Year's Day Party


The girls met up with Goofy and when they asked for an autograph, he asked for a table - and used their heads so he had something to write on!


Goofy & the Girls


Welcome to Nassau, indeed.


Playing at the Atlantis Beach in Nassau...man were those currents strong! Morgan kept getting pulled under, but we had a ball playing hard in those waves.


Exploring the Predator Lagoon at Atlantis


Aunt Lisa, Kelsey and Morgan
Nassau, January 2, 2007



Morgan doing what she does best - pouting - while at the Atlantis Aquariums.


Grining girls at the Atlantis Aquariums


With all this play, we worked up quite an appetite. Back at the ship, they were ready with ice cream and bandanas to ring in "Pirates IN the Caribbean" Night.


After a busy day at the beach, we find our bed happy to see us :c)


Our last full day found us at Castaway Cay, where we were greeted by the Flying Dutchman pirate ship from Pirates of the Caribbean 2.


Photo Op at Castaway Cay


Every night brought a new show in fabulous Disney style. Tonight's entertainment was Disney Dreams about a girl who must find her magic to fly before the clock struck 6.


Disney Dreams was, of course, lead by Peter Pan...with his own rendition of "Bibbity bobbity boo": "Salad on noodles, catsup on poodles, bibbity bobbity boo."


This was also my birthday night, and Aunt Lisa and I took the time to celebrate in the adult's only restaurant, where they brought me this beautifully decorated plate, which they set next to my AMAZING chocolate suffle. Yuummm...I can almost taste it just thinking about it!

It was our last full night, but it wouldn't be complete without some last minute time with our favorite Disney friends. The celebration is called "Till We Meet Again"


Singing and waving farewell


I was just a little excited to see Stitch, who happily clicked back at me.

And my own Disney Dream come true...

Me & Mickey

It was 3 days and 4 nights to remember, and the memories still bring smiles and tears to my eyes. How very lucky we are...

Luv,
Deirdre

“New Year's eve is like every other night; there is no pause in the march of the universe, no breathless moment of silence among created things that the passage of another twelve months may be noted; and yet no man has quite the same thoughts this evening that come with the coming of darkness on other nights.”
- Hamilton Wright Mabie

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