asd – Page 3 – Spinning Wheels

Busy, busy week

Besides my job, this week has been a busy and exhausting week. As a recap, I went to yoga for the first time in a bajillion years on Monday. It was so hard — I am so out of shape. I also had to deal with insurance (re: my son’s ABA therapy), gather garbage, do some wash, change the kitty litter, and wait for the roof to get replaced. It was just stressful trying to do a lot in a little time. Boy, was I in a pissy mood. Tuesday, I felt utterly crappy and I had my allergist appointment that led to 4 new medications that have not aided in making me feel better but just cruddier. Wednesday was my son’s ARD for 1st grade. Already nervous about what services could potentially be cut, I was still feeling utterly horrible physically. Thankfully, not much was cut. We were, overall, in agreement. The shortness of the ARD (the last one took 2 days) gave me time to rest, which I NEVER get to do. Thursday, a friend drove me to our sons’ first Field Trip in kindergarten. They went to the Fort Worth Museum of Science and Nature. Can I tell you how exhausting a field trip can be? My mother noted it may exhaust me more since I am older than a lot of the moms — thanks! Today, I got to have a nice “normal” workday at home. Unfortunately, the roof work started today, which means I got to hear hammering since 8:30 this morning.

I did make a few decisions today despite the noisiness. I decided to end my chiropractic care. I went through the suggested 15 session schedule and have seen no improvement. I am definitely going to have to take a different course of action when it comes to my back. The only time chiropractic care helped was in NYC when I went to an integrative practice. They would not even adjust me for the first few weeks — just do stem and hot/cold therapy. After adding adjustments, physical therapy was slowly started. Finally, 30 minute back massages were added. It worked like a charm and was a fantastic approach. I may try to find a similar practice here.

My other decision was to stop taking 3 of the 4 medications the allergist prescribed. I’ve decided to finish the course of antibiotics but stop the rest. Nothing has changed in my overall being and definitely not the areas they were targeting — cough, labored breathing. I emailed the office and they said to follow-up Monday if there was no change with being on the antibiotic.

Next week, I am hoping to conquer yoga 2 days. I know, crazy. I will definitely go Monday and let you know if I survive.

Queen of Allergies

I went to the allergist to talk about how my allergies have gotten worse and the shots do not seem to be helping anymore. Unfortunately, I get the highest dosage possible and I get an epi-rinse since I get a bad reaction from them. When the doctor came in, she referred to me as “the Queen of Allergies”. Below is a list of my allergy test results. Anything with a fraction, I am allergic to (they did not test food). She is gung-ho, YAY, allergy shots, so she does not want me to discontinue. Instead, she wants me to take a bunch of meds to try and feel meh, instead of hellish. She thinks it’s a combo of untreated sinus infection, allergies, asthma, and acid reflux. I go back in two weeks. Above my allergy list is my treatment list.

“Mommy, you’re sick a lot”

I woke up this morning with terrible allergies (surprise, surprise). I told my husband that I probably will not accomplish much around the house and only have energy for my work. My son retorted, “mommy, you’re sick a lot”. I told him that I have really bad allergies that have been making me very sick. In actuality, I have a compromised immune system due to my allergies, stress, lack of sleep, etc. Hearing that from my son took me a bit aback. He usually does not pay too much attention to how others are feeling. He is only 6 and usually life revolves around yourself at that age. Double that with his autism, he usually will just keep asking for me to do things and take him places once I say I am sick. He probably still will afterschool. However, he does know he has to accompany me to the allergy doctor. Maybe he will listen a bit to what she tells me, but I bet he will just be focused on the iPad!

I was hoping to feel better today. I did yoga for the first time in a long time yesterday. What was a simple, beginner’s class really tested me (and my allergies). I also rode the bike for an hour yesterday. Today, I planned to ride the bike but woke up with terrible wheezing from the allergies. I did conquer work and was able to do a few laundry chores during my lunch. My lunch has consisted of leftover matzo. My stomach feels terrible, as well. I figured crackers would be the best bet. Tomorrow is my son’s ARD. I am sure the stress of that is not helping today.

The results are in.

My LEAP blood results as well as the battery of blood tests my PCP/Internist gave me are in. I will start with my regular bloodwork. Basically, there were two areas that I have high scores in (YAY!). One was EOS which I googled and found means the following: Eosinophilia (e-o-sin-o-FILL-e-uh) is a higher than normal level of eosinophils. Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. I will gather that it has to do with my allergic reactions to life, in general. The nurse did not discuss, but I gather my marks weren’t high enough to investigate further. The second is my testosterone level from hormone replacement therapy. Normal range is 8-48 and my level is 217. Well, that explains a lot — the body acne, the hair, the wonderful, quick-to-anger mood, the constant hunger and weight gain, the overall GROSSNESS. Unfortunately, all I can do is wait for the testosterone to leave my body which can take 3-6 months. I will be doing follow-up bloodwork in 2 months.

The LEAP results are a little more complex and I formally get to discuss with my nutritionist tomorrow. I am reactive to almost all foods and, GASP, caffeine! It shall be a big lifestyle change, but I need it. My allergies will be the death of me, otherwise. I am least reactive to: peach, cranberry, mushroom, spinach, white potato, millet, cocoa, vanilla, mint, carob, pecan, peanut, pinto beans, and potassium nitrate. That should make for an interesting meal plan. I am most reactive to: barley, caffeine, cashew, celery, codfish, corn, cow’s milk, goat’s milk, grape, green pea, msg, paprika, parsley, rice, saccharine, sesame, sodium sulfite, sorbic acid, strawberry, tapioca, tea, tilapia, tomato, walnut, and yellow squash. We have to slowly add members of the above family of food to see if I am reactive to them as well. The test, obviously, does not cover every food in existence. I am most sad about caffeine and tea. I don’t think I can totally drop coffee all together, but definitely need to wean the amount I currently intake.

I am looking forward to tomorrow’s discussion and will keep you posted.

Baby Steps

Such big plans I had with my “45 for 45”. I do still plan to work on health improvement but taking a slightly different approach. The past month I have been reassessing my health and allergies. I am allergic to most everything environmental (barring some strains of mold, horse dander, and roaches). If I am allergic to trees, grass, etc., I must have food sensitivity. I have met twice with a nutritionist. The first time was to set simple goals for stress relief, adding vegetables/fiber to current diet, replacing afternoon coffee with tea, and taking Epsom salt baths. The second meeting was to discuss my horrific allergies. I take two types of allergy medicine and have been on 3 maintenance allergy shots for about 2 years now. They are not making a dent. I figure I must be adding to my misery by eating certain foods. Although reading pro and con articles on the subject, I decided to have LEAP bloodwork. My allergist’s office also gives the test, which is not covered by insurance, for double the cost and ONE follow-up appointment. The nutritionist says it takes much more than one follow-up since, in addition to the bloodwork, we will be testing other foods by adding them slowly back into my diet. I hope to have my results back by the beginning of May. I can just picture EVERYTHING in the red category (meaning highly reactive).

Yesterday, I made an appointment with my primary care physician/internist to discuss my medication list and the side effects I am having. In other words, I made the appointment because I feel gross. I am on hormones due to my oophorectomy/hysterectomy. The testosterone has given me terrible body acne and body hair growth. Neither of which I have ever had to deal with in my 43 years. I am also very inpatient and quick to anger. Well, those I have had to deal with in my 43 years. My other medications all tend to have the side effect of fatigue and insomnia. I get roughly 4-5 hours of sleep per night and am dragging all day. That does not give me much motivation, focus, or acuity. We have decided to reduce my supplements to only a handful (Multi-vitamin, Calcium, D3, B12 shots, and probiotic), replace Zyrtec with Xyzal, and taper off Gabapentin. I may also decide to taper off Singulair, Fluoxetine and Simvastatin.

Lastly, I bought a FitDesk for downstairs. With the new puppies, I can no longer ride the bike upstairs without doggies under my feet. In the living room, they will stay on the couch while I ride and work. I received the bike on Tuesday, built it with the help of my husband Tuesday night, and have ridden it Wednesday, Thursday and Friday for 45-50 minutes each day. I have hopes to, eventually, add other exercise to my routine, but baby steps!

First day of kindergarten

Many sleepless nights and many years of therapy have led to today…

There are so many racing thoughts that it’s hard for me to put them into words. I am so proud of my kiddo for all of his hard work. Today, we walked to school and he was full of happiness. He did confess yesterday that he was a little bit scared. It is such a big change.

I felt overwhelmed and in sensory overload entering the packed elementary school. I cannot even imagine how he may have felt. I was relieved when his friend from pre-K arrived in the classroom. From the videos posted throughout the day, it seems like the two of them have been attached at the hip.

I hope sleep comes easier tonight and that all is good in public kinder.

Bumpy.

Thankfully, today I do not feel as FLAT as yesterday. There are some bumps today. This is odd because last night was my worst night’s sleep in weeks.

Do I function better with terrible sleep? Is that my normal? I was able to straighten up parts of the house and do some loads of laundry. I was even able to paint my nails. How much I’ve accomplished!

I am glad to have some of my glimmer back. It’s been long overdue.

Flat.

My mood is flat. My temperament is flat. I am not my usual bubbly self. Okay, so I may not normally be bubbly but compared to my current disposition…

My therapist said she has never seen me so “meh”. She thinks that although fluoxetine was enough in the past, that post-hysterectomy me may need an additional medication. She fears my blah may turn into full-out depression. She suggests adding Wellbutrin/Buproprin. I agree with her.

I left a voicemail with my physician.

End of post. Flat.

Today

Today life seems overwhelming.

I do not, necessarily, have a long to-do list for today, per se. It is my life’s to-do list which is overwhelming me.

Why do I start obsessing over tomorrow or next week or next month or next year?

Perhaps the steroids I am taking for my rash are not helping. My heart is racing a bit and I am sure they have something to do with that. Only three more days and, hopefully, they will start weaning from my body.

Short blog = too many thoughts (and not one to truly focus on).

Start and stop and start and…so on

Over the past few days, I have been trying to write a new blog post but unable to do so. The thoughts get a bit jumbled. It all sounds flat. Today I hope to get at least a coherent thought out “on paper”.

As has been a topic of several old posts, my medications have had to change once again. Sunday, I awoke with a full-body rash. To put it lightly, it was a little disarming. I called my psychiatrist (voicemail) and my physician (voicemail number 2). As I was panicking and feeling itchier by the minute, I missed my doctor’s return call. She told me to stop my lamotrigine and talk to my psychiatrist on Monday, take Benadryl, and go to urgent care for steroid shots if the rash was bad. Due to the vastness of the rash, I decided to head to urgent care.

Once seen by the doctor, I was immediately diagnosed with a drug rash. However, they could not be certain if the rash was caused by the lamotrigine (which has a severe warning for rashes) or the sulfa- antibiotic I was taking (also known for rashes). Since I started both at similar times, they told me to end both, gave me a new antibiotic to start and told me, once again, to talk to both of my doctors the following morning. I also got the parting gift of two steroid shots (one that would act immediately and one that was long acting).

In addition to stopping the lamotrigine, I decided to stop taking the Abilify I was weaning off of when increasing the lamotrigine. That leaves me taking 20 mg of fluoxetine daily. While living in California, I was only taking the fluoxetine, exercising, eating healthy, and was in great spirits.

The move to Texas, the full-hysterectomy, and the stressors of life affected me greatly. My therapist and I do not believe I require the strong prescriptions the psychiatrist has been suggesting and supports my decision to only take fluoxetine for the time being (while adding exercise and healthy habits). I have had severe weight gain from all these psychiatric meds as well, which does not help one who suffers from depression.

I am ready to shed most of the meds with the help of my therapist, doctor, and support system. I am also ready to shed some of this weight!

Focus back on me

It’s been about a week since my last post and it’s hard to blog after the hiatus.

To begin with, we went to Oklahoma City for the weekend. Due to the incredibly high temps, we mainly visited museums: The Toy/Action Figure Museum, the Banjo Museum, the Osteology Museum, and the Oklahoma City National Monument and Museum. I feel like a cloud of sadness has surrounded me since visiting. There are too many emotions to put into words, so I will let that be.

On a lighter note, I returned with a bad thumb infection. The infection and mega-antibiotics made me quite sick for a few days’ time. Nothing seemed to matter except rest and getting Roger taken care of. I even took time off of work, which is a rarity. Yesterday, the doctor had to take “thumb matters” into her own hands (punster). She got the infection out of my thumb and I am feeling much better today. Yesterday, nausea followed the infection extraction.

Today, I have been trying to clear the clutter of work and my neglected house. Clutter makes me unfocused and unhappy. Perhaps today’s organization will shrink that cloud of sadness.

Focus off me

I’ve been focusing these posts so much on me that I have neglected to write about the person that led me to blog to begin with, my son. It is nearing his sixth birthday and I feel like changes in him are occurring daily.

It’s amazing how far he has advanced in the past month. He will have (somewhat) reciprocal conversations, tell you his feelings and ask about yours, answer questions directed to him or even not directed to him (ie, the TV), and he now sleeps in his bedroom alone!!! We are still in the prize stage of sleeping alone (which can be equated to prize stage for potty training). I did tell him that the prizes will start to occur less frequently. However, it seems the biggest prize for him is 1) waking me up once his clock tells him it is OK to and 2) having just the 2 of us watch TV up in his room in the morning.

The speed at which the switch over to “independent” sleeping mimics his switch from pull-ups to potty training. It took YEARS to occur but the final push was quick. Geez, that mimics my labor too.

Now, our big issue is to find other things to work on in ABA. Poor us! (sarcasm)

Optimism trickling in

Things are falling into place and optimism is trickling in. Although by nighttime, my optimism tends to fly out the window.

Today, I had a therapy appointment with an amazing therapist and a fantastic individual. I discussed my involvement on the SEPTSA board (Special Education PTSA), my plans to volunteer at Roger’s elementary school, my work projects, and my plans to delay, or not even seek, my graduate degree. However, my therapist believes I can do all of the above. I may have to lower my expectations (choose to get B’s in school so I can still focus on my family and interests). Even though, wholeheartedly accepting a B seems quite a stretch for me, I do think I am going to exercise the thinking that I will try my best but do not want to neglect all other areas of life.

Though I had a troubled night sleep due to the above worries and the possibility that the decaf I ordered yesterday was actually caffeinated coffee, I am feeling refreshed, renewed, and optimistic.

I felt overwhelmed this morning but feel READY this afternoon!

Sleep part 2

I slept! Granted, I am awake before Roger and trying to stay quiet so he doesn’t wake. The sound machine, ear plugs, cozy cover, and 1 Benadryl worked. Or else, I slept out of pure exhaustion which does happen on occasion.

I know I should take advantage of this time and try to sleep some more. Unfortunately, when I wake I am up for the day. The wheels start spinning and sleep is over.

I have no expectations that last night’s sleep is now the norm. However, I will take what I can get!

Sleep, I hold you so dear

Luckily, last night Rob slept in Roger’s room and I got to sleep in our king bed. I might not have gotten the best night’s sleep (lots of tossing and turning and waking at 2 am out of habit), but I was able to fall back asleep and stay in bed until 6:30ish. I feel like a brand-new woman. I am the polar opposite of yesterday’s zombie. I feel refreshed, raring to go, happy, and not irritable (well, I am alone all day, so it may be too early to say that). I am enjoying myself today and getting lots done.

This afternoon, our new ABA will arrive to talk about our sleeping issues. It could not have come at a better time or on a better day, since I am functional. I am HOPING things getter better.

Currently, in the background, I am listening to Belle & Sebastian’s Live on YouTube. As if to be reassured in my “bigger” size, I see the woman behind the beautiful voice and music. She is not what one would envision. She is normal, not made up, what one may say is a “plain Jane”. But she is not plain, she is angelic as soon as the vocals leave her body.

I am so much more than my outer appearance. I have to remember that. Daily affirmation time?

Zombie

After yet another 2 o’clock hour awakening (2:14 to be exact), I am a zombie. Seriously. I am no longer inhabiting this body. Something that is barely functioning in airplane mode is inhabiting my body. With today’s workload, I was unable to nap and am afraid the drive to Grapevine and back may be my downfall. I usually yawn my way there but hope I do not end up closer to sleep…

One may think my child will be utterly exhausted after a full-day of school after waking so early. HA! He will be raring to go and off we are to go to the CAC. I hear heat, humidity, and sun really wake you up. If I’m a zombie now, I can’t even imagine what I will turn into by 6:30 this evening. Seriously, I am trying to conjure what I shall be: a comatose zombie?!

The Saga continues…

Well, the happiness I had a couple of weeks ago ceased when I ceased sleeping “well” (I did not sleep well before but it has gotten worse). I have been crabby, so irritable, and a pleasure to be around. Luckily, today was my appointment with my psychiatrist. Again, we are trying a new medication. However, this medication takes about 4 weeks to build up in your system, so I have to remain on these non-altering, constipation-inducing pills until my next appointment on Monday, August 8th.

On another pleasant note, my son’s anxiety is through the roof. I guess having two anxious parents does not help one bit. However, my son is five and crying hysterically that he won’t be able to take his vitamins or brush his teeth before school because there is not enough time. This was not always so, as he has asked in the past, to take vitamins when he gets home. Each day his anxiety builds more and more about small issues. It seems some of his sensory issues have been replaced with anxiety regarding non-sensory issues. I wonder if that occurs….hmmm, will have to ask the specialists.

Needless-to-say, the household has been a joy….wanna come over one morning?!

Hell aka Co-Sleeping

As an infant, many people have their babies in a pack-n-play or bassinet next to their bed. The child will then be moved to a crib…toddler bed…twin bed, etc. in their own bedroom. Our situation started out much the same as we moved Roger to a crib…

Fast forward to almost age 6…
We have graduated from the “family bed” to one adult sleeping in the king bed in the “big bedroom” while the other adult sleeps with Roger in two beds pushed together….to two beds slightly separated….to two beds on different parts of the same bedroom. I am usually the lucky adult who gets to sleep in my son’s room. Recently, Roger has been waking in the middle of the night and climbing into the twin bed I get to sleep in.

Sleep…what is that? I am averaging 1.5 – 5 hours of sleep per night. This is getting absolutely ridiculous. Next Wednesday, I am hoping for a godsend of an ABA therapist who will begin our journey to end this Hell I have created. Wish ME luck!

Anxiety

Right now I am feeling incredibly anxious. What is the source of my anxiety: lack of sleep from a son entering my twin bed (co-sleep in son’s room but in different beds) around midnight through seven this morning; worry about my father’s surgery tomorrow; signing up for a Mother’s Night Out when I get socially awkward around a group of people; volunteering for the Autism Education Summit when I am now worried it may be too biomedical for me; spending money on a new dining room set; the combination of all those listed above?

I know it is silly to worry about such menial things (barring the surgery), but that is part of my diagnosis and one aspect of my personality that I am working on being more even keel.

Now, I am feeling quite anxious because I have nothing to write about…perhaps tomorrow my thoughts will not be as scattered. Stay tuned!

Killing it!…for 3 days

This past week has rocked and I am proud of myself. With my constant physical, mental and emotional health issues, I have been barely existing and using my only energy for my son, Roger. This week, however, I have concentrated and focused on work, some light housekeeping, and, most impressively, exercise! I feel like I am getting back into the groove of life.

This morning, for exercise, I took my old walk path. Although living in flat Texas, the walking trails in Highland Village are incredibly hilly with “Caution: Steep Hill” signage. It kicked my butt, especially in this horrible heat (even at 9 am). However, I did enjoy the two quick conversations with strangers along my route. One had two adorable pugs (my absolute dream dog that I am highly allergic to….one can still dream). The other was an overheated lady, like myself. I thought to myself, “I love my neighborhood”…and “Although residing in the state of TX, I think I could live here a very long time”. The return walk sucked ass but I made it…what else could I do?

Yesterday, I went to kickboxing with a good friend of mine. It has been a many month hiatus and was glad to have the good company to chat with as I tried to keep my composure while working out. I really did not try that hard to keep my composure – cursing, stopping, heart rate too high. But, again, I made it!

Monday, I weighed myself and was my highest weight in my entire life – including full pregnancy. I know one should not put value in the scale, but it was the motivation I needed (now that I can be motivated, thank you meds)!

Insurance appeal

I figured since I’ve been absent from posting the last 3 weeks, I’d post separate entries regarding what’s been up in our world.

One of the most frustrating issues has been a denial of insurance for ABA services due to “not being medically necessary” for our 5 year old son with autism. We buy our son his own insurance policy just for ABA services since self-funded employer plans can opt out of providing it.

Anybody with an inkling of autism knowledge should be aware that the only proven therapy to help is applied behavioral analysis (ABA). Roger began Early Intervention in California at the age of 18 months, prior to his diagnosis, and they utilized the Denver Model that includes ABA. He was in that program until we moved to Texas in October of 2013.

The following year we were not aware of child-only policies, so he only attended PPCD 3 hours a day, had OT 1-2 times a week and Speech once a week. He did progress a little bit but nothing like he has in 2015 while attending the Easter Seals’ preschool with a BCBA.

Of course, I received the letter on a Friday night and began freaking out. Saturday we had plans so I could only mentally obsess. Sunday was the day I dedicated to compiling my appeal. The package that I sent in a Priority Medium Flat Rate Box consisted of over 250 pages of evaluations/observations/ADOS/IEPs. After I finished that task, I wrote letters to Easter Seals’, our psychologist, and pediatrician to fax their letters separately.

I am relieved that it is off in the mail before the holidays! One less thing to think about until I follow up next week.

How many days is today?

I don’t know about the rest of the world but, for me, one day can feel like several disjointed days. Maybe it is because it begins so early and chaotically. Maybe because I have to make shifts between my jobs. Maybe because we are overscheduled. Maybe because I am exhausted from a lack of sleep and too many things on my mind.

Whatever the reason, today feels like I’m on part 2 right now. This morning was a lengthy parent-teacher meeting. They are very helpful, listen attentively and have great input. After the meeting, I decided to make a doctor’s appointment for Roger. He has had a cough for about a week that is so terrible at night that we are all sleeping horribly. I don’t think he was sick, but I wanted to double-check since he is scheduled for an endoscopy next week. I called from the school parking lot and scheduled a 10:45 appt. It was 9:15 in Grapevine which is roughly 30-40 minutes from our house in Highland Village. Instead of pulling him that early, I got some coffee downtown and picked him up a little after 10. The doctor reassured he is all good to go with the endoscopy and prescribed a nasal allergy medicine. She believes his coughing may be so severe due to his reflux issues. A quick run to Five Below for a transformer for being such a good boy (his words) and we headed home. Thankfully, my parents were able to watch him this afternoon, so I could enter part two of my day.

We arrived home minutes before my folks arrived. I was trying to bring all of our junk in from the car, get Snuffles outside to go potty, open Roger’s new toys, get a cup of coffee, take out the smelly trash, start laundry, etc. My parents always get to see me under a mountain of stress. A mountain of stress from just doing normal chores. However, I try to do all these things in ten minutes or less. I get frazzled, inpatient, snappy, pissed off, and super sensitive. Getting into my work flow actually calms me and gets me back into my routine. Clearly my Aspergers loves routines and gets upset when my routine is upset (as it was this morning).

Part three of my day will occur after my work shift. It usually consists of picking up Roger, going to therapy, getting his dinner ready and the bedtime/bathtime routine, and a quick interaction with my husband. Tonight, my parents are taking him to therapy (so I can make up work hours) and will be making dinner at their house.

I know I am lucky to have my parents available….and, yes, I did apologize for my earlier demeanor with them!