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Thursday, August 28, 2014


I've never been fond of August, an uncomfortable month. Summer as I know it is coming to an end and the whirlwind of back-to-school is about to begin.

This year, I'm ready.

Or as ready as I can be. Every year presents new challenges and this year, my best friend at work will not be there. Reduced to part time without benefits because of budget cuts, he has accepted a job in another state. I'm so sad and will miss him terribly. I also have cafeteria duty (yuk!) and a very large 9th period AP class, both of which are less than ideal. Additionally, I have three 9th grade classes and one 12R; last year, it was two 9th and two 12th. But life is about change and how we adapt to that change, positive or negative.

I'm excited to meet my new students and grow as a teacher. I'm doing a few things differently and I'm looking forward to hopefully having success. Whatever I have left to do can be done when I return on Tuesday for the conference day.

As for my health, I'm doing well on the increased Concerta, with the only side effect being occasional mild anxiety. I actually ate bibimbap this past weekend as was ok with it - the first entirely solid meal I've had in months! I've been eating some solids every day, but I'm being careful. My ADHD is definitely better - I just feel more calm, centered, productive, and organized. I think one more increase may help, because I'm still having trouble getting started with tasks that require a lot of effort.

I've had three out of five IV Venofer (iron sucrose) infusions. Going to the Monter Cancer Center for these treatments is really humbling, as most people are there for chemo. I feel very fortunate that, with all of my health issues, I'm not battling cancer. It's a comfortable space - patients are ensconced in semi-private cubicles with a TV, DVD player, and recliner. I've been able to bring my laptop and a book and get some work done.

After the first round - 100mg in 30 minutes - I had some burning in the arm the IV was in and bloating, but I walked out feeling GREAT, though I had a fever of 100 when I got home and felt very hot. After Monday's treatment, 200mg in two hours - I felt ok, just very hot. Tuesday was a different story - I was exhausted and had severe GI upset. Yesterday I slept until 10 (that NEVER happens) and still had some GI upset but felt more energetic. I had another infusion and felt ok. Before bed, I took Benadryl because I've read it can help. This morning, still a little GI upset, but I feel GREAT. Like I'm not dragging around the dead weight of exhaustion. I have another infusion scheduled for Friday and the last one Tuesday. I really hope that this is the end of my troubles with severe anemia. I can't afford to lose more hair, and being cold all summer made me afraid of how miserable winter would be.

As for my children, they are great. B has been acting up a little lately - we think it's that he's been out of school for two weeks. B really thrives on structure and routine, so on Tuesday, we went to B's school. The school moved to a new building, so I wanted B to see it. More importantly, he played with his teacher and saw his speech therapist; he had a great time and is no longer declaring, "I'm not going to school forever more!" We're seeing a little regression but he returns to school the same day I have my first day of classes (9/3) so that's right around the corner. And he made such tremendous PROGRESS this summer - I am profoundly happy and grateful. I watched some videos of him from last summer...he is a radically different child. The biggest breakthrough is that he loves playing with other children! He makes fast friends on the playground when we go, and we had our first play date last week with his best friend and "girlfriend"! It was such a success that we have plans on doing it again when we have a few days off next month. B talks nonstop and even describes his day at school. Through role playing, we discuss how to handle various social situations, including people not being nice. B expresses his feelings frequently and is liberal with his love. He's starting to read a bit and can do simple math. More importantly, he is such a sweet, caring, good little person.

Little D went to B's school this summer part-time and LOVED it. The first day, she had to be stopped by the teacher to say hi because she just ran in! No separation anxiety, and it was a great outlet for her boundless energy. She is such an open and sweet little soul, a bright light. I worry, though, because she is sometimes indiscriminately friendly. She's going to learn like I did as a toddler that not everyone is nice. D is also talking a LOT and we understand her about 75% of the time. Like B, she is so demonstrative. Just this morning, she was up before B and kept asking for her brother. When B came downstairs, she cried, "Brother! My brother! I found my brother!" and ran to him with a big hug. Though they antagonize each other at times, they are close and I feel so happy when they play and really enjoy each other's company. Bedtime is still a trial - she can't seem to self-soothe or stop moving. I often have to rock her for a few minutes and then gently scratch her arms & legs until she falls asleep. One night, I thought she was asleep until she started screaming. She wanted her Crocs on and as soon as I put them on her feet, she was snoring. D also had a party last week - a little diva party at which she had her nails painted and her hair "done" (combed and some glitter put in - she won't tolerate more than that). I was surprised that she actually put a fancy princess dress on and walked the "runway" - though of course she came out before her turn. We left early because she was on the verge of a meltdown - she can handle only so much before she tires out and feels overwhelmed (I know how she feels!) But she's happy, healthy, and like B, a sweet and good little person.

Big D has been busy all summer with work in July and redesigning our yard. It looks great and is (hopefully) almost done. He returns to work this weekend after a three-week vacation. He'll be transferring firehouses any time now, it's just a matter of paperwork. We have that in mind as the new school year starts; also, he is going on his annual firehouse golf trip my first full week back at work, so it will be hectic. He loves this trip, though, and I'm glad after a busy summer that he has the opportunity to go. He's such a great father, husband, and man, and I'm grateful for him every day. I appreciate D a lot more since I've been practicing mindfulness; I find that often when I'm angry or impatient, my thinking is self-centered. Instead of snapping at him, I redirect my energy and it's made a big difference.

Mindfulness has had a significant impact on every area of my life. It's such a vital tool for people with ADHD. Combined with medication, I am so much happier and appreciate just how much I have :)

Thursday, August 7, 2014

ADHD & The Dentist

Visits to the dentist are nerve-wracking. One bad experience with lots of needles and painful drilling traumatized me, and usually I don't receive good news because of the dry mouth that Sjogren's syndrome causes.

Yesterday, I needed three small cavities filled. I wanted nitrous oxide, as usual, because it enables me to not panic when I'm having work done. This time, however, it was really unpleasant - like being drunk. I hated the feeling, and I felt sick for nearly two hours after. It also triggered my ADHD, which was much worse until my daily dose of Concerta kicked in this morning.

I'm not sure why this experience was different - my ADHD has steadily grown worse as I get older; I'm on a different medication; I'm anemic. Whatever the difference is, I will never request NO2 again. It was a good reminder, though, of just how severe my ADHD has been, and how helpful mindfulness and medication are.

Thursday, July 24, 2014

That Didn't Take Long

My good mood started turning sour at the dentist this morning. Three new cavities that need filling because of my Sjogren's Syndrome. I need to be more circumspect about my anti-cavity regimen, including ACT Mouthwash w flouride & MI Paste. At least I don't yet need a root canal for one particularly troublesome tooth. I do, however, have to wear the night guard I despise so that I stop grinding my teeth.

Worse news came when my primary care physician's office called. Results from blood work from Tuesday were not good. My iron-deficiency anemia is steadily getting worse. It's a LOT worse compared to November & February. I had to call my hematologist to make an appointment to discuss iron therapy - most likely injection or infusion, because I can't tolerate the pills. I don't consume much that has iron in it, so I have to work on that immediately.

I also had to call my gastroenterologist, because the numbers indicate that I am still bleeding internally somewhere. In the past 6 months I've been scoped twice, and all he found was a few benign polyps, mild gastritis, and gastroparesis. I suspect the problem is in my small intestine, which he did not look at.

I'm so frustrated, angry, and a little scared. I'm so tired of being poked, scoped, shocked, scanned, x-rayed, etc. I do not want more tests. But I made the appointments and also have a pelvic sonogram scheduled, which I would be told to do if I didn't already have it planned.

Days like this I let myself feel what I need to feel, and tomorrow move on. It's not about what I want - it's about dealing with what I get.

Sweet Relief

Day 8 on the Concerta and I am so grateful that I was stubborn and went through all of the unpleasantness and pain and waiting.

I'm experiencing improvement!

The exhaustion has crept back in the afternoons - I think it might be the Concerta starting to wear off. But I'm not feeling so overwhelmed, I'm more efficient, and most importantly, I FEEL BETTER. Life seems manageable and I'm not so emotional. I am a LOT calmer. The timing is good, too, since D worked 100 hours last week and 70+ this week.

I'm just so grateful today that there are meds available to help treat ADHD. It's a personal choice, and meds are not for everyone. Awareness and coping skills are paramount, but a medication that works makes life a LOT easier.

As a plus, I can eat cheese and egg whites again! I'm slowly getting my system adjusted. When I increase the Concerta, I am going to try solid food.

I'm very grateful today. :)

Monday, July 21, 2014

I am the Face of ADHD

Great article on The Daily Beast about how adult women 24 - 36 are increasingly being diagnosed with ADHD. This quote from the article really resonates with me: “Women are less likely to be diagnosed,” Dr. Geri Markel, an educational psychologist and founder of the website Managing Your Mind, says. “As girls they just don’t look like what people think of when they picture ADHD.”

I am the face of ADHD.

Saturday, July 19, 2014

Moving Forward

I keep putting off a new blog post...always too busy. But I want to dedicate actual time to this as I chronicle my ADHD journey.

It's been a rough few months on several fronts. I went through thorough neurological testing, which I will never do again. It was HIGHLY unpleasant. As of now, I do not have a diagnosis of dysautonomia, but my nervous system is definitely a little off. I have mild orthostatic intolerance & vasovagal syncope. Fancy language for I need to stay well hydrated and be cautious when changing positions so I don't faint. My gastroparesis is idiopathic - I have it, but the neuro doesn't know why. I had to stop eating solids as I mentioned in April, and even had to stop eating cheese and egg whites a few weeks ago. So I started drinking Naked drinks & V8 for better nutrition. I've been chronically exhausted and have the usual aches and pains.

But all of the testing was worth it, because two days ago I started Concerta (extended release Ritalin)! I am so excited to try a new class of drugs for the ADHD. As an added bonus, Ritalin is a treatment for gastroparesis. In just two days I see a difference. The chronic bloating is much better. Day 1 wasn't fun - I felt really weird - awake but spacey. Day 2 was good - I felt like myself, but calmer and more centered. Today it's the same, though like yesterday, I feel a little more tired in the morning than usual (though the chronic exhaustion is gone). I also have more trouble than usual getting my day started - I feel like I'm lacking motivation and still overwhelmed. I think I will see more of a difference when I increase the dosage in 11 days.

It's a relief to FINALLY be able to try medication again to treat the ADHD, but I've also been working hard with cognitive and behavioral techniques. I've been practicing "mindfulness", a type of meta-cognition. It's been really helpful to step back when I feel my emotions taking over or when in a social situation, think about my feelings and where they are coming from, and consider what to do or say. I also realize that I'm subject to intense emotional storms, and I'm working on techniques to weather them, because they do pass.

Also, for the first time, I have begun actually LISTENING and HEARING. D was getting very frustrated with me and sat me down to explain why. Because I listened, it changed my life. I wasn't raised to be self-centered, and I never thought of myself that way, but it seems that I am hardwired to be self-centered (a common ADHD trait). It's paradoxical because I spend a lot of time helping others and have a great capacity for empathy. But, looking back, I definitely have always had that self-centered aspect. For example, when I was in elementary school, I knew it made other people angry or upset when I wanted to read a book rather than interact at a family party, but I didn't get why. I wanted to read my book, I said "Hi", why couldn't I just read my book? It was what I wanted to do.

I think my emotions are so intense and my impulses so strong that they lend themselves to being self-centered - it's difficult to see outside of the intensity I'm feeling. Now that I am finally aware of it, I can be less self-centered. The downside is that I spend a lot of time thinking about how my behavior in the past has affected people and I feel intense sadness and shame. I'm trying to find a balance; I want to be self-aware without being severely self-conscious.

I also had an epiphany around the time D spoke to me. I love working with teenagers; I relate to them well. I especially enjoy working with students with ADHD or other issues - kids whose behavior can be challenging. My room is a safe place for them; some even come to me to cool off. I realized that I get along with them because I am JUST LIKE THEM. Worse, in some ways. I walked around with knives out, so defensive that I was on the offensive all the time. I was critical of others because I felt so insecure. I rejected people so they couldn't reject me first.

So I'm also working hard on NOT being defensive and critical. I'm also being more social (and I do feel the Concerta has been helpful with that from day 1). Social and family ties are so important, especially for my children. And people who love me are 100% supportive; I had a great talk the other night with some family and I think now that they have a better understanding of how ADHD affects my life and how, undiagnosed, it led to the severe problems I've had in the past. Unfortunately, the diagnostic criteria for ADHD was very different when I was younger; many people, like me, were only diagnosed after a crisis triggered by a major life event. I look pretty normal and I've achieved a fair amount, so people wrote off my issues as me being an a$$#@!#. This is why I try to teach students with ADHD to advocate for themselves and develop coping skills, and why I teach ALL my students about ADHD. Awareness is still very poor in general. ADHD is not an excuse, it's a neurological difference. Awareness of how ADHD has such a profound impact on every area of life is important to understanding - and not harshly judging.

I can't walk around with a sign or tattoo identifying me as an ADHDer, and I can't make people understand how I think and feel. I can, however, strive to be a better person every day, and work with my ADHD to compensate for weaknesses and exploit my strengths.

And I am so, so grateful for D. He has stood by me when no one else would, suffered through my tribulations, and sacrificed much. Above all, he has loved me, even when I couldn't love myself. I am a better person because of him and his stubborn refusal to give up on me. With a man like that and two awesome children, I am fortunate. :)

Wednesday, April 30, 2014

Restless Legs, Restless Mind

D's at work and we were touching base like we always do. I mentioned how my ADHD is really bothering me and how much I was looking forward to trying a new medication, and he told me that my restless legs syndrome has been severe. It struck me that the restless legs are a physical representation of my restless mind. Though my mind may slow down when I sleep (it never stops, though, as I have vivid, weird dreams all night), my body becomes more active against my will, causing me to thrash around most of the night.

To cope with other worsening neurological symptoms, I've switched temporarily to a liquid/soft foods diet, increased my use of moistening agents for my eyes, and increased my water intake. As much as I'm miserable with my symptoms, I am hopeful because I know that appropriate medication can improve my symptoms dramatically. I'm hopeful that a stimulant will work as the Strattera did and that it won't "poop out".

Wednesday, April 23, 2014

Time Flies & is Unpredictable

I've missed posting, as sporadic as it's been.

I was right in January - the Strattera was indeed "pooping out", as doctors so elegantly term when a medication's efficacy declines to the point it is no longer therapeutic. I decided in February to give it another chance and remained at 80mg - after all, ADHDers are not renowned for patience, and I felt worse as I decreased the dosage. A month later, D told me that the medication was no longer working - I can't sit still, I'm constantly on the go, I am incredibly impatient and quick to snap. I suppose because the decline was gradual I didn't notice how bad my ADHD had become again. I saw the dr last week and cried in frustration. I go back in two weeks - in the meantime, I'm tapering off. This week it's 50, next week 25. Then we are going to try a stimulant. I think that pointing out to her that other neurological issues have worsened as my ADHD has worsened - the delayed gastric emptying, orthostatic hypotension, restless legs - convinced her that a stimulant would be appropriate at this point.

In the meantime, I am so frustrated. I'm forgetting major things and making silly, careless mistakes. I forgot that my babysitter had jury duty. I read B's school calendar in a hurry and thought he had school on a day he was off. My hair was greasy for over a week because I was using conditioner instead of shampoo. It's many things like this daily - and the sharp decline in sleep quality as my restless legs syndrome worsens - that make me feel impatient to try a new medication.

However, I have been working really hard to organize EVERYTHING - my home, my classroom, my life. It takes more effort and time for me, but I am determined. I feel and even think better when my environment is orderly. I spent most of my spring break organizing at home and poring through new work material when I wasn't with the kids.

In addition to the ADHD issue, I was stricken recently with human parvovirus B19 (fifth disease). I caught it from B and was really ill. My rheumatologist fortunately tested me for it as well as lupus, because I was displaying many symptoms of a lupus flare (he tests me for lupus occasionally anyway, as I have some symptoms more indicative of lupus than Sjogren's syndrome). I still have arthritis in most of my joints, but it's no longer so bad. I'm also no longer experiencing the facial flushing or rashes all over. Initial blood work tested positive for anti dsDNA antibodies, but subsequent testing was negative, so no lupus. I was really frightened at the thought of lupus - it usually has more serious complications than Sjogren's. My children are so little. Even though I don't have lupus, this is the first time my blood has tested positive for ANY autoimmune markers. I've been dreading this - my last rheumatologist (an excellent doctor) told me that my blood would be negative for markers indicative of autoimmune illness until some major event triggered positive results. This virus appears to be that trigger. From this point on, I need to be even more vigilant. The recovery hasn't been so easy. Something as simple as cutting coupons can cause an arthritis flare in my hands, which seem to be the most affected.

Even though it hasn't been an easy fall/winter/spring, it is SO much better than last year. We are overall much healthier. B got glasses for his astigmatism. He's not crazy about them, but he wears them all day at school and we're working on improving compliance at home. Other than asthma flares, he's been pretty healthy. His speech is remarkably fluent and he still enjoys school. His CSPE annual meeting is next month. We're hoping to keep him in school through the summer, as he displays significant regression after breaks. He currently loves Hooked on Phonics on his iPad and even reads some words now. We need to read more to him - I hope that he develops the same love of reading that I have always had. B is growing into his role as big brother nicely, chiding D when necessary ("You say sorry to Daddy right now!), guiding her, playing with her, and every once in a while still giving her a push or a smack. Overall, he enjoys her company. He is such a sweet and smart little boy, though he is in a testing phase. Firm boundaries and choices when possible help, along with a lot of love.

D is doing well also, and it's such a pleasure to get to know her as her language skills rapidly grow. She and B are such different children, and I enjoy their differences. She knows exactly what she wants and she is SO stubborn. But she's so sweet, too, and spring break was nice because I had some bonding time with her. I had so much more alone time with B than with her when they were babies. If B attends school this summer, I'd like to take a swimming class with D. We are definitely going to butt heads, but I think we understand each other in a way other people don't. We are a lot alike. I can't live her life for her, but I hope my wisdom through experience can help me help her avoid some of the major bumps in the road I've faced.

Saturday, January 18, 2014

Losing the Golden Ticket

I'm feeling frustrated. The Strattera has more or less stopped working for me, even at the maximum dose of 100mg. Having enjoyed a respite from the worst of the ADHD symptoms, it's as if the Golden Ticket were ripped out of my hands. I'm used to living with full-blown ADHD, but I REALLY appreciated the relief that the medication provided. I'm irritable, have chronic stomach aches, trouble sleeping; the RLS/periodic limb movement disorder are back and I'm not sleeping well. I'm exhausted. I'm snapping at people. I'm less organized and more overwhelmed. My body image is poor right now also, another symptom common in women.

I have an appointment to call my doctor on Monday. I've faxed her twice this week with blood work results she requested 6 weeks ago as well as updates on how I'm made me feel better to let her know the higher dose simply isn't working out. It's better than no medication at all, but not much. I'm REALLY hoping that she switches the med to a stimulant. I've never abused a medication; I'm circumspect about taking what I'm supposed to take, no more or less. The "anxiety" that plagued me and made her reluctant to prescribe a stimulant was ADHD, not true anxiety.

I'm dealing with another health-related issue: the flu has visited our household. We were all inoculated at different times. I received my shot in October and had a severe adverse reaction, confirmed with my doctor. Within 24 hours, I was exhausted and very achy; within 36 hours I had a high fever and severe body pains. I missed two days of work. I now think that, in addition to my autoimmune illness causing my immune system to be unpredictable, I had such a bad reaction because I had the flu in May and my body still had strong immunity. D's firehouse was stricken with the flu (confirmed). Nearly everyone has been ill, though the men who received the flu shot, like D, were sick for a shorter period of time. Several days ago, the site of my inoculation became raised, red, and very sore. It seems that I was exposed to the flu by D but I haven't gotten sick. The kids have been ok too, though D woke up this morning with a fever of 103.5. She's acting happy and pretty normal since I gave her a bath and advil to reduce her fever. She's congested and has had a low grade fever and slight cough all week, so I think it just might be one of the typical viruses that the kids get.

I think I STILL have the sinus infection I've had since October, shortly after receiving the flu shot. I really despise the fall/winter, because I hate the cold and I hate the constant illnesses we all have even more. However, I'm focusing on the positive - it's not nearly as bad as last year, when little B had pneumonia twice and bronchitis three times; both kids were sick nonstop from September through the end of June. I had pneumonia twice and bronchitis several times as well. Additionally, from January 1 - June, we had SIX ER visits: January 1 for B's periorbital cellulitis; late January for me for pneumonia & emergency gallbladder surgery; little D in February for a head injury; little D in April for a high fever; our dog Chloe in May for bloat; big D in June for burns to his face from a fire (terrifying to get a text that he was on his way to Cornell Burn Center!) Last year was one of the worst of our lives. We survived it, and when I'm frustrated now, I think of how awful last year was in comparison.

Being relentlessly positive is a wonderful coping mechanism. Sometimes I feel self-pity, bitterness, anger, frustration - I'm human, and it's ok. But I don't wallow in bad feelings; I acknowledge them and move on. Having the attitude that the universe is crapping on me was detrimental to my happiness.