School shopping and Meltdowns

I took my son school shopping yesterday. It went very well, I bought the obligatory sweatpants (all he has worn for 3 years +) but I was able to sneak in a pair of jeans and a pair of cargo pants as well. Now we will see if he will wear them when the weather cools off enough. Just the fact I was able to buy them with Will with me is amazing to me, growth is possible people. Trust me, if Will can grow as much as he has I the last 6 months, almost anything is possible.

We also bought sneakers, I was getting frustrated because I couldn't find his size in the store, he became adamant about the style sneaker he wanted (they light up when he walks). I was so pleased that the last pair I spied were in his size. He willingly tried them on and announced they were perfect. He even put them on later that day when he went to play with the neighbor kids. This is huge as sneakers have been a major battle in this house. He loves his crocks and hates tying laces because it is so difficult for him. Every day last year was a battle of wills as he tried to convince me he could wear his crocks to school and I patiently explain that "this year the rule is you have to wear sneakers to school.". This is because he has OT at school and recess. He has tripped wearing crocks and has therefor refused to participate in recess as well as struggled in OT. We found once we implemented this rule he was more successful in OT as well as more active at recess.

We also picked up socks and undertheres as he badly needed both. We got the obligatory school supplies as well, the pencil case, the pencils, markers, crayons, glue sticks notebook and binder. He did so well at the store.

And then we came home......

The melt downs started. None of them lasted overly long, but there were a LOT of them. Everything set him off. Today has been no different. He did get to meet his new teachers last night at the open house and have ice cream. The new teacher in the day treatment room pointed out a third computer which interested Will, but the changes were many. Maybe too many? I don't know, only time will tell.

The start of school is definitely causing much anxiety for Will, and it doesn't help that his sleeping cycle has finally taken a dive. We have been in such a good sleeping pattern for so long I almost thought he had outgrown "the cycle". How foolish am I? I am so excited for the rest of my weekend.

On a completely unrelated note: tomorrow is my court date for my divorce. I'm hoping this is it and I can begin my life as a single woman. Here's hoping?

Sometimes I feel like a fraud

Do you ever feel like a fraud? I must admit that I do sometimes. Why do I feel like this you ask?

Well I'll tell you, I feel this way when people tell me what an inspiration I am, or how great I am at staying positive. (now don't misunderstand, I'm not told this all the time) Lately its been my son Will's support staff. They come in and I have a smile on my face when I greet them. Because of this they have been telling me lately how wonderful my outlook is through this MS flare up. That I am an inspiration, and such a great mom.

I have to tell you, I don't feel like any of those things. I have felt more "down" lately then positive. Just because I'm trying (and I feel like lately not that successfully) to accept the things I cannot change about my circumstances and still smile at people and not want pity doesn't mean I'm an inspiration or anything else. I am a woman who's going through a crappy time right now and struggling. I have cried more in the last 3 weeks, felt hopeless, wanted to give up, and been too tired to care about certain details in my life. Does this sound like an inspiration to you?

That is why I feel like a fraud these days, I'm just a woman, I'm not that special.

I'm not feeling like super woman

It is five days post steroids. I am still all over the map as far as emotions, one minute I am so angry, the next I'm sobbing as if my heart is broken. I do not do well when I'm on an emotional roller coaster. On top of this, I am still not eating and/or drinking like I should. Part of the reason is the steroids are still effecting my sense of taste, but also a lot of the time I'm too tired to get anything, and as we know, that's not a good thing when you live alone.

I went to the doctors in Wednesday because I was having a lot of bizarre symptoms: a sore throat, a site neck- really, the skin was so sensitive for 3 days that the shower hurt when it touched my neck, to tremors, weakness, vertigo, heaviness and aching in my legs.

The dr had no ideas, sent me home with instructions to take 800mg of ibuprofen every 4 hours. some of these have faded, my neck is no longer sore and my throat is more irritated then sore now. My biggest problem is the vertigo, and the heaviness/weakness and aching in my legs.

My son has been wonderful through this ordeal, he has been more understanding than I would have given him credit for if I hadn't seen it for myself. He has put up with dr appts, IV treatments, and most of all a mommy who has no energy/ and moving VERY slowly due to legs/balance issues.

Today Will and I went grocery shopping and it wiped me out. I understand that I need to be patient with my body, I need to accept the help of others (extremely difficult) and be forgiving of myself for not being able to be everything I think I should be for Will, and everyone else in my life.

On the blessings side of life: my aunt surprised me with some beautiful vegetables this week, my soon-to-be-ex floored me by mowing my lawn (it's been a month since I've been able to do this chore) and do my laundry for me. I also had a wonderful friend(s) who brought me ice cream when that was all I wanted the other night but couldn't get down to the local DQ.

This relapse has certainly brought home the fact that I am not super woman. I am in fact a human, with a human body that is fragile and needs care. I am not a super mom, I am in fact a human mom that is not perfect, but who does her best for her child. I am a woman who needs to do more for herself.

I recently talked with a friend who has anxiety/panic attacks while driving. He called to tell me he was disappointed/angry with himself because he had been doing better lately, but that this morning he had a full blown attack while driving somewhere new. My advice was to cut himself some slack. So why is it so easy to give that advice out to others but take it myself? Why do we always think we have to be perfect but accept others imperfections? We are able to love and accept others for the perfectly imperfect people they are but we hold ourselves to unattainable perfection and then beat ourselves up for not living up to the impossible.

So, I have been given this opportunity to accept the imperfections, the "weaknesses", the humanness that is me. To accept, and to love this part which isn't going away. I choose to love myself, in all my imperfections. I will always strive to be better, but I will do my best to accept that my best is good enough as long as I keep going and try as hard as I can in all things.

What will you choose?

Day five and we're done!

Just finished day five. Unfortunately I do not look like an eggplant as was my goal, but still look like a beet.

My veins are not what they once were, at least I have one good one, so after a couple failed attempts they opted to go back to my right elbow for round three.

Being there by myself today was almost harder than having Will with me. I didn't have anyone to focus on and therefore went into pity party mode. I hate feeling sorry for myself, but there are times when it just plain sucks being alone with no one to hold your hand and/or help with the little things in life we all take for granted. Like getting a drink, or getting a quick snack.

I find that I am quite dehydrated from lack of drinking (all tastes like dirty rusty water, yuck!) and of course I haven't been eating well, either too tired to get anything or doesn't appeal to me. Now that's not to say I haven't been eating because I have, just not enough, and most of it not good for me.

So, now I am looking forward to letting my arm heal, letting my body heal, and flushing these steroids out of my system. I am putting out good vibes that my MS will continue to quiet down, old and new symptoms will fade and I will not need steroids for a VERY long time.

Luckily, both my clients for today have plans with their families so I didn't have to rush right into work. I can take the next 3-4 hours to relax before having to gear up and take care of others. Sometimes things just work out. Have a blessed day!

Picture 1. My IV back in place after failing to find any good veins anywhere else.
Picture 2. Nemo and Marlin. Had to take the picture for Will so he could see the fish again as he is with his dad and didn't come with me.

Talk about guilt

I've been reading a blog by a wonderful woman struggling with MS herself and the roller coaster of emotions that come along with it.

Today my own guilt has come crashing down on me like a ton of bricks. With this flare up (worst one I've had to date) and the resulting steroids I have not been up to doing ANYTHING. It doesn't help that I had such a huge falling out with my parents at the same time either.

My son has been amazing. I can't say it enough. He has come out of his own world in ways I wasn't sure was possible. Asking to help me, asking how I feel and what I want to do. He takes my breath away.

However, today when we came home after my forth day of steroids I fell asleep on the couch. When I woke up I realized as I was asked yet again "do mommy, what do you want to do now?". That I am not capable of doing much, and I haven't been able to do much of anything all week for/with my brilliant child.

This isn't fair to him. He has enough to deal with in life without a mom who can't do anything. Yes, he has come a long way and can thankfully occupy himself for periods of time. But he was looking forward to having his mommy time. He is definitely a mommas boy. He has fun with his dad, and they've been doing some really fun things lately. (I think this is part of my problem too. I'm supposed to be the fun one, but I don't have any money like dad does, and I don't have the physical capability that dad does right now. So I guess you could say I'm jealous right now.)

Talk about feeling useless and like I'm failing my child. And at the same time I feel guilty because I wish I had someone who could have taken Will this week so I could rest without pushing myself past my limits to take care of him.

I guess all this rambling is the jumble that is in my mind. I blame the steroids and MS. I will continue to breathe, do the best I can do, and love my son with every fiber of my being. Because with him in my life, how could it be anything but perfect? Have a wonderful day.

Day four down, one more to go

Today was interesting. Instead of going to the Scarborough IV I fusion therapy center, we were at the hospital for treatment. The setting was a little different, but Will did such a great job. I even got several compliments on how polite, quiet and well mannered he was. Does a moms heart good to hear such great compliments about her son.

We had some problems with the IV port, it took the nurse almost 20 minutes to get it working. In the mean time we were both covered in saline solution and other stuff that I won't go into here. (you're welcome)

When all was said and done, they had to remove the port anyway as it started giving us problems at the end too. So another war wound has been added with one more to go tomorrow. All is good. Thank goodness needles and blood don't bother me in the slightest.

I'm actually thankful the port came out as it makes my arm feel better, and more importantly Will isn't as concerned about how much it must be hurting me. I have to say he has really surprised me in how affected he has been by this and the concern he continues to show me. I must have done something right!

Picture 1. My botched attempt at wrapping my arm for a shower
I tried using Saran wrap and was just going to tape the ends but I couldn't rip the duck tape with my one hand so it all got wrapped. Hint: don't use duck tape for a mummy costume.
Picture 2. My IV once it got situated, I was told not to move my arm at all so it didn't go pear shaped again.
Picture 3. Will enjoying the I've in his cup after he drank all his ginger ale.
Picture 4. Making silly face and showing off his silly t-shirt to mommy smile.
Picture 5. A couple of the fish Will was fascinated with upon arrival and departure.

Have a wonderful day, that's my goal anyway.

Day 3

Hi all. Just got home from day three of IV steroid fun. My son was with me again today. He did very well. Only started to fall apart once but held it together when I gave him my phone to play with.

He started out taking funny pictures of himself and me on his computer, made his own game out of the monopoly card game I brought, was super excited when he realized they had cartoon network on the tv there and that it was playing one of his new favorite cartoons.

They put the new IV port in my right elbow this time. They left it in so here's hoping I don't screw it up before my treatment tomorrow morning. Will was very upset to see the needle still in my arm. He started crying, I did my best to reassure him it didn't hurt. I hope he believes me. He WAS quickly diverted by talk of snacks (ah to be 10 again). He even jumped out of the car and helped me pump gas to help. He offered to go to his grandparents for a few hours to give me a rest. What a thoughtful boy I have! Oh wait, turns out he just misses them and is hoping for ice cream. Oh well, we'll pretend he is more concerned with my welfare.

So now we are home, he happily ate chocolate covered pretzels after having to eat an apple first and is on his computer playing God knows what so I ca relax for a few. Life is good

Again, pictures in random order.... Sigh, maybe I need to look into fixing the computer? Maybe?

Anyway pictures: 1. My new IV site, 2. Will's silly picture of me, 3. My arm wrapped up for the night, we'll see how well I sleep adding this into the mix ;), 4. A very bad picture of me showing how flushed the steroids are making me. (good thing it's only 5 days, so I'll be purple by Sunday but hopefully won't turn eggplant. lol) 5. The silly picture Will took of the lovely nurse who set me up.

Have a great day everyone. Btw: comments etc are always welcome in case anyone wants to know. Enjoy!

Day two

So yesterday was day two of my IV steroid infusions. Will went to his grandparents house so I could have a break.

It was stressful interactions with my parents due to the argument (outburst) from the day before. Anyway, I dropped him off and drove to my appt. I got there and they flushed my IV port (left in from the day before) and hooked me up.

For anyone who has NOT had IV steroids- I highly recommend you never try it if you don't have too. Sleep is nonexistent, everything tastes like rusty metal (yuck!) and you feel a little jittery. Or maybe that's just me, who knows....

The weird bit was when it was all over. They tried to flush out the port but the IV port had failed. I got all the medicine before it failed. Hmmm, that just seems strange to me. Anyway, they removed the port and will put in a new one today somewhere else. I wonder where? The other bizarre part to this was that my hand didn't bruise. I'm very impressed with this as I bleed EVERY time I'm stuck with a needle. Ok, I guess I can't say every time anymore can I?

All in all, not a bad day. I got a little reading in, a little rest without my sweet son. Funny thing- because he didn't come with me (maybe) he was feeling fine and asked me several times how I was feeling. How sweet is that? I never thought he would be asking so often and genuinely seem concerned.

I have such a wonderful boy who is growing all the time in all areas of his life. I am so proud of my son. He amazes me every day. Let's see if he can keep it up today and tomorrow at my appointments or will he become sicker than I am? Got to love kids.

Again, pictures are random since I can't put them where I want or caption them. I apologize. Try are of my hand with NO bruise. Praise God! Hallelujah! The second is of the bruise that developed from me baby vampire bite, and the third is me getting my steroids. Seriously, I better be wonder woman by Monday! Have a great day everyone.

Well, it is the MS

Went to my primary dr this morning. He listened to all my symptoms (complaints) called my neurologists office and talked to one of the drs there only to be told it IS an MS flare up. I have started my 5 days of IV steroid infusions. What joy, what rapture. Everything including water tastes foul. At least they left the IV/port in so I won't be riddled with bruises.

I do have one small bruise on my right forearm where they made their first attempt. The bruise started developing immediately. Didn't really show up till a couple hours later. It amused me really because there are two little pricks side by side. One from the lidocaine injection and one the failed IV. Made me think of a little baby vampire attack. Then I started giggling over why they are turning babies so young into vampires. (can you tell I'm a little sleep deprived? lol)

I had to bring my son with me today and it went fairly well. Towards the end he decided he has all the symptoms I have.....only worse. So I called my mom to see if she would be willing to watch him tomorrow. She said yes and then proceeded to yell at me for something that unintentionally upset her. I apologized for my part but she was still very upset. I can only hope that as she calms down and looks at the situation she will realize that I was out of my mind with my MS flare up and couldn't think of a way to have her not share how bad off I was with the world on Facebook. I should have just called her and asked her nicely to take it down. I know she meant well, but I wasn't in a place to think that through. U just commented on her post that things weren't as bad as she made them out to be. Again I apologize and hope that she will understand I never meant to disrespect her or not appreciate everything she and my father do for me because I appreciate it all more than I can say.

Here are some pictures in no apparent order. I don't have a computer to put them in the right order and/or caption them so I apologize for that too.

They are of my baby vampire attack, my view and IV drip, my IV port which is now bandaged, and my son occupying his time with a rolling stool and a banana as only an ASD kid can! ;). Have a great night everyone!

If not MS then what?

For the last three weeks I have been having increasing problems. Have you ever had restless leg syndrome? I never have but my father lives with it and has for years. It started with a "restless/creepy crawly" feeling in my legs. It was very unnerving and annoying. I looked up online and saw many references to MS and restless leg.

Well, over the weeks (and especially the last three days) it has gotten worse. Much worse. It's not a pain, but I feel like I'm losing my mind. I am constantly moving my legs and now my arms to get a modicum of relief from this feeling. I feel like this has to be how drug addicts feel when going through withdrawal. All the tv shows and movies show druggies screaming that it feels like bugs are crawling all over them. They want out of their skin.

This is how I feel. It is all day with the exception of a few minutes of respite in between every few hours. Last night I only slept fitfully (with a lot of tossing and turning) for about 5 hours. -I'm a 8-10 hour a night kind of gal.-

Part of the problem is my concentration is shot all to H-E-double hockey sticks. My son wants to play games and have me watch videos with him. I can only tolerate about 10 minutes tops then I'm feeling nauseous with my need to move.

While at work yesterday I figured out that tapping my leg helps me concentrate. I sat down and read my book for an hour and a half. When I looked up I was so pleased I had been able to concentrate for so long until I looked at my leg. I had slowly been hitting my leg harder and harder. I have a large purple bruise on my right leg.

This is when I realized I need to call my neurologist. When I did I found out he is on vacation. I talked to a nurse in the MS department, she made me feel foolish (maybe unintentionally) explaining my symptoms. She talked with a dr and called me back telling me it sounded like nothing MS related and sent me on my way to calling my primary dr. Not related to MS? Was she serious? MS can present in almost any way possible! The Internet has many articles about this restless leg feeling and MS! How could they dismiss it so quickly?

I'm not saying it definitely is MS, but if MS can cause someone (a close friend of mine) to have everything she eats taste like butter except apples then why can't this possibly be MS related?

Anyway, my primary dr is concerned. He wanted to add an extra appt. to his day today to get me in. The problem with that? I was working alone today until after the appt. time. So, after playing phone tag with his nurse I now have an appt. Wednesday morning at 8:15. I hope he has done ideas as to what is going on and how to help because I feel close to losing my mind.

If this is how drug addicts feel in withdrawal I can understand their willingness to do ANYTHING to score their next hit. I feel like I would do almost anything to get rid of this feeling.

Sorry for the vent/rant session, sometimes a girl just needs to get it out there and not just festering in my mind. Hope you can take it for what it is. A woman who is slowly losing her mind, is sleep deprived, and so frustrated with feeling like this.

Have a beautiful and pain free day.

My MS is not being so quiet right now

For the last couple of weeks I've noticed that my feet (more specifically the inside ankle area) has been extremely sensitive and getting more so every day. I didn't think much of it other than it was strange but talking with 2 good friends from camp who both live with MS I brought it up only to find that they have both struggled with this too.

When anything, and I do mean anything touches my feet I want to scream. Like I said, it appears to be getting worse. My son wedged his foot under my thigh last night and then was moving it. Just feeling him move against me (anywhere on my legs) makes me want to scream as well makes me feel very nauseous. I'm not sure what all this is about, but it's very frustrating and I'm not sure how long I can handle feeling like this before I lose my mind.

It doesn't help that I just want to crawl out of my skin whenever I am still. I am now constantly moving my legs and/or rubbing them to deal with this restless/tingly/creepy/crawly feeling. I know I should probably go see my neurologist about this but it's $50 for my co-pay and I can't afford it. So, unless things get a lot worse I will be living with this until it resolves or till I go see my neurologist at the end of the month for my yearly appt.

Anyone else feel like this? Did anything help? And maybe most importantly: how long did this last for you?

What a week

So, I've been talking lately about going to camp for the week. Well, we went, and now we're home. So I thought I'd share what a wonderful week it was, and how amazingly well Will did there. Now that's not to say we didn't have some struggles, because we did. But overall it was so much more than I had ever hoped for.

Will brigs his wii, DS, laptop, and videos when we go to camp because that's how he spends his week. He stays in the camp and needs me to be there with him. He has developed a fear of all things creepy crawly. BUT, not this week! Yes, he spent a good amount of time in the camp with his electronics, but e also spent a large amount of time outside with the other kids for the first time EVER!!!

He went after the girls more than the boys, and I had to have a talk with the girls to educate them on ASD, but he was out there! They let him play! He also made another friend to play one on one with. And he's Wills age! What a week.

We went out to the ball field one night for a bonfire and s'mores. Will had 2 s'mores then wanted to leave until he saw all the kids playing on the far side of the field. He asked to play! So off he went and played for an hour with all the kids. Seriously, I can't get over this. Such a change this year.

I remember, the last few years I have not participated in anything at camp. This year I was able to go to the adult bible study for the first time ever, because Will went to his class and was able to be there AND participate without me sitting with him making sure he stayed safe. I was able to go to communion every morning, rehearsals for the musical (I had 5 solos - I haven't sung in years. Oh how I've missed it!), I went to song service (and led it 3 evenings) and I got to go to vespers at night! I did skip vespers one night because Will stated he missed me and hadn't spent enough time with me.

I had people around the Grove telling me how different Will seemed this year. So much happier, much more outgoing, and very helpful. He was a server for his junior youth group breakfast. He served me eggs and was so proud. He went to the Good Shepherd Food Bank and volunteered as well as many other acts of selflessness. He even calmly walked away when another little boy who was struggling kicked him. When an adult stepped in to talk to the other boy, Will walked away! How amazing!

We went swimming, we walked a labyrinth, we loved, we participated, and he even came to the show Friday night. I wasn't expecting him to stay for the entire thing. Sitting for 1 hour or more is extremely tough. I did give him my iPhone to take pictures with, he decided to video tape part of the show. When we walked in, he started telling EVERYONE that his mommy was in the show and she was undecided. (one of my solos has me as an undecided person who eventually decides to follow Jesus). When it was over he got up and started clapping and yelling "that's my mom! Wasn't she awesome?". Now I ask you, how amazing is that? This from the boy who tells me not to sing, and has ever since he could talk. I would start to sing a lullaby and he would say " no mumma, stop, just stop."

I am so blown away with the progress my son has made since he went to Spring Harbor. They gave us such a wonderful foundation. Will has worked so hard this year and it really shows. I feel truly blessed.

I just have to add: I knew we had made progress but when you live it day to day it's hard to see all the growth until you are thrown into a new situation. Have you had similar experiences where you are astounded by your child's growth?