Present...

So I have kinda given you a rapid overview of the highlights of the last year, mostly about the kids...now, what have I been up to the last year...

Well starting last May I started working more hours at work which eventually turned into an official full time position in January. I like my new role - more leadership/admin - and the hours work well for me. I knew it was time to start working full time and while I would have loved to stay part time forever, I'm glad I was able to stay home most of the time until M was three.

In May I also started to read again. I used to love to read and stopped after the twins were born. In May I installed the Kindle app on my iPad and started with the wildly popular Hunger Games and went on from there. I will have to admit now that reading has now become my obsession. It seems to calm me and take away some of my day to day anxiety. This is good, but also bad because of course I should be doing things like cleaning the house. I am a very fast reader - I can finish a 200 page book in a few hours - and I have been tracking my reading on Goodreads. In the last year I have read 307 books. Don't judge me.

This past fall I started to get into a slump. I was more introverted and really didn't get excited about much of anything. It was hard to power through events for the kids and things like Halloween. While I wouldn't say I was depressed, I definitely had a low period. I started looking at friendships and relationships I had and realized that many of them had seemed broken for awhile. I'm pretty sure I had been posting about this, but my twin mom group who I had been very connected to in the past, seemed to cause more hurt for me, and I often felt like I was left out or intentionally kept out of things. I did try to talk myself out of those feelings but they came to the forefront this winter. Initially it started after none of the friends from the twin group came to the twins party. I did hear from one group, but two other friends who have been at all the other parties just didn't show. It's kind of pathetic to say, but I was literally in tears that night knowing that what I was feeling wasn't off, but hurt that they allowed that to impact our children. The final nail in the coffin was a few weeks later when I was having a hard time keeping up with all my responsibilities due to health/work/school so I emailed the entire officer group - about 9 people, 4 of whom I would have once said were good friends - to let them know everything that was going on and to tell them I had to step down. Only two people, one of whom is not included in the four mentioned above - emailed me back to acknowledge what I had said. I initially wasn't going to completely leave the group...but after that obvious statement on where I stood with them...I haven't been able to go back.

My health has also been a frustration this past year. My MS is doing fine and in fact, this February marked 5 years since diagnosis with no flares since diagnosis! This is pretty huge!! Unfortunately I have been having problems with cellulitis. Right before Christmas I developed a spot under my arm that spread very quickly. In a matter of days I was admitted to the hospital and given IV antibiotics and had to have an I&D performed. There was no explanation for it other than it just sometimes happens. I was discharged from the hospital on Christmas Eve and thank goodness my parents were able to care for the kids while I was in the hospital and for a week after I got home. Almost exactly a month later, I developed another spot, this time on my abdomen. It followed the same rapid spread and I did everything I could to stay out of the hospital. This time my parents were not available and there was no way I could be admitted. I had a shot of antibiotic in the butt and was on 4 different pills. For a week I was taking over 20 pills a day to stay out of the hospital. Had my parents been here, I would have allowed myself to be re-admitted. After about a week things started to turn and luckily got better. Since that time I have had two more spots come up. Neither have been as bad, nor required medications. I have stopped taking my MS meds because that is the only thing I can think of that might be causing this. I went off them for 2 months and did okay and as soon as I restarted them, a developed another spot. This whole thing has been very frustrating and every time a new spot surfaces it causes me a lot of anxiety not knowing if this time I will need to be hospitalized again.

And because all the above wasn't enough to keep me on my toes...I started school in April as a full time student. Crazy huh? My hospital has a huge focus on all their RN's having their BSN degree...and I don't. They decided that all RN's in higher level positions had to get their degree within a few years or be stripped of everything. So, I am begrudgingly going back to school. I am in a 100% online program and so far it hasn't been too bad, but I would, of course, rather not be doing it. My evenings and weekends are focused on classes now...which stinks. I should graduate in September of 2014 if all goes well.

Otherwise, I think I'm about the same. My weight hasn't changed any...which is bad. It's always on my 'I really need to' list which I never quite seem to do anything about. Money is tight as always. Friendships are even suckier than before, because while I've always had a hard time having close friends, the few I had are gone. Right now I am very isolated and withdrawn. I need to work on this, but I'm not sure how. And...in news probably related to the last point, I have started to feel like maybe I don't want to live my life by myself. I've always been very happy being single and have rarely had thoughts otherwise, but lately I yearn for another adult in my life. The problem is the package I'm offering isn't very appealing and anytime I think I might reach out, I am reminded of the high likelihood of failure and additional hurt.

So...here's my year in a nut shell. I will try to post again before May 2014 ;0)

To leave you, here are a few pics of the kids I took this weekend

MS Walk

This morning was the annual MS Walk. This is the third walk we has participated in since my diagnosis. The first two years I did really well, raising more than $500 each year and getting really into it. Last year we skipped it because M was so little and this year...well we officially were in the walk, but we left the group early to go ahead and see the zoo since it was cold and there was a threat of rain. I went with a friend of mine from work and my parents came with us too :0)

As usual, the kids had a great time. M thought it was great! Every animal got a shriek and a pointed finger. He seemed to really like seeing all these huge animals that were new to him. The twins, who have been here a million times before still enjoyed seeing everything and even learned things as this year there were many more questions about the animals. I was glad to have the extra adults in the group since M wanted to be held some and even wanted to walk at times.
S had one of those super cute moments. Before we left the house he was told that he could buy one thing at the zoo because he had some money. At one point in the zoo the kids were playing on a play ground and the adults were chatting. For a second I couldn't find S and when I turned around he had ordered a drink from the food stand beside the park. He had his wallet out and everything. The thing is though, that I had his money. All he had was some Mexican money my parents had given him from their trip. I went to the stand and they said that I didn't owe them anything. They said he was so cute. He went up there and said he had 'one million dollars' and wanted a drink while pulling out his money. So S got his drink, but was reminded that in the future he really needed to ask mommy before doing anything like that again.

No Good, Horrible, Very Bad, Day

I think the non stop pace from the last week and the nightly 3-5 hours of sleep caught up with me today. Today was a bad day to be a mom, especially a single one.

The kids all woke up this morning at 9-ish which you think would have left me feeling pretty good with being able to sleep in, but once I got up, it was obvious today was going to be hard. I couldn't keep my eyes open. Everything I did was a struggle. I ached all over and if I wasn't in motion, my eyes were heavy. I pretty much spent the morning in my chair holding Max and sleeping every time Max napped. In between our naps, I felt like I was in a zone.

At 2p I went back upstairs for an afternoon nap with M. We slept 2.5 hours and then M wanted to be nursed again. While nursing I struggled so hard to stay awake...and couldn't.

Right now I am more awake...but it's still a struggle. I made dinner and bathed myself and the kids. Hopefully I'll be putting M to bed soon and then maybe start to unwind for the night. I really hope tomorrow is a new day!

Why Copaxone Sucks

On Friday night I gave myself my daily injection. They always hurt, but this hurt more than usual. About 3 minutes after I gave my injection I got up to check and there was a dark red/purple mark about 12 inches long from my navel to my pubic bone. I freaked out a little but then it started to fade so I figured it was just a skin reaction. Well fast forward to Sunday and this is what my belly looks like.

For size reference it is about the size of a dinner plate. I must have hit a pretty big blood vessel. I have bruised pretty good before, but never anything this big or deep. I have a good size hematoma that I hope decides to absorb on it's own, and not give me any further problems. I am soooooo sore. My pants hurt and when the baby wants to stand or his legs get active....ouch.

Remind me not to inject in that spot again!

Copaxone

Yep, that big evil word has re-entered my life. After deciding to take a break from my daily injections from MS (around 12 weeks) I have decided to restart this past Friday.

I decided way back when to stop the injections because pregnancy, for whatever reason, seems to put MS into remission. While initially I was just going to continue with the meds through out the pregnancy, I decided to take advantage of this protection and give my poor skin a break.

For those who don't take this med, it causes intense stinging for about 15 minutes after the injection followed by welts, redness, itchiness, bruising and hardness for weeks to months after the shot. So...needless to say...I needed a little break.

While pregnancy seems to stop MS, about 60-80% of women have a flair within 6 months of the post partem period. So, this is my rationalization for restarting the drug at 24 weeks. Although there are no studies to support my thinking, I believe that by restarting the med, and allowing myself a good 12-16 weeks to have it back in my system, I should avoid the post-pregnancy flair. I am lucky in the fact that Copaxone is the only category B MS drug and the only one where it is not strongly advised to stop during pregnancy. Here's to hoping my little theory is correct!

Have I Told You How Much I Love My Neurologist

Today I made the call to Dr L to let him know that I would not be getting that MRI and that I was now pregnant. I left the message on his nurse line. A few hours later he personally called me at home to congratulate me. Dr L is so awesome. Anytime there has been something important to discuss he always calls me personally. He always seems to 'know' my case and I never feel like another patient to him. I am very lucky to have found him. I am one of those people who has never liked any of her doctors and switch every few years because I think they're asses :)

Thank goodness for Dr L!!

Oh, and since everyone is bugging me with the number of babies I may be carrying, I thought I'd add a fun poll :) I have a doctors appointment on May 4th. At that time I should find out when Dr D is going to schedule and US for me.

Saturday - MS Walk

I had my annual MS walk this Saturday. The weather was supposed to be miserable, but luckily the rain held out until our drive home. We had a lot of fun. I walked with my team and my good friends J & S came with me. S also brought her daughter C. The kids had a blast seeing all the animals at the zoo and I had a good time while walking for a great cause. I raised over $500 and I plan on making this a yearly event. Our color was orange - hence the kids colorful attire.

Cycle Update

Today is CD11. My shipment should be here on Wednesday. I am thinking I will probably inseminate on Thursday or Friday.

Initially I was freaked out this cycle because I registered high on CD9. I never register high until CD11 or later. I thought I would ovulate before my vials could arrive and therefore this cycle would also be a bust. Well, the monitor has stayed on high and so far my OPK's have been negative, so I think I'm okay.

I have also tracked my temperatures this month, which, I think, drives me more crazy then anything, but I am seeing if that sheds any more light on my cycle. All other fertility signs are slowly heading in the right direction. I hope this means my body is doing what it is supposed to and I will ovulate correctly and after my vials arrive.

In other news, I went to my neuro doc today for a routine follow up. He can't find anything wrong with my neurological exam and says I am doing great. He does however want to do another MRI just to see whats going on. Of course it will be scheduled in the next few weeks, a time period in which I wont know if I'm pregnant. Everything says MRI's are safe during pregnancy, but I have a feeling when I tell this to the radiologist, he won't want to do it. Oddly enough, that would be okay with me. In a way, I don't want to know whats going on. My life is fine right now and I have no MS symptoms. I don't want to ruin that by hearing that I have more lesions - ykwim? I assume that most likely, since I am symptom free, that I don't have any new activity, but there is always a chance. In a case like this...I truly believe ignorance is bliss.

What One Year of MS Can Look Like

Approximately one year ago I started treatment for my MS. There are 4 different basic options right now. They are all injections given on a different schedule. They all cause pretty significant side effect varying in degree. I chose to take Copaxone. While there are still side effects, I felt they were less life altering than the others. Unfortunately this drug is also the most frequent in dosing so I get to give myself daily injections. The side effect that I get, and approximately 70% of it users is very painful, welted, red injection sites. It can be a pretty dramatic reaction, but usually only last 30 minutes to an hour. I figure if this is what I have to deal with to keep the symptoms away, I will.

Since I have started, my neuro says that this drug has gotten better and better results from clinical trials. He is happy with the results so far and is happy with my choice. Currently in trials is an MS pill. Hopefully in the next 10 years I will be able to ditch the shots and start taking pills. What a wonderful day that will be for my skin!

One Years Worth of Shots

One Year Ago Today...

My Doctor called me and told me that I had MS. The tests had come back and confirmed what he had suspected. I wouldn't say my life fell apart, but it certainly cracked a bit.

I am lucky in many ways.

1.) I have not had any further flares since the one that diagnosed me.
2.) My very expensive meds have been 100% covered by my otherwise crappy insurance.
3.) My Doc is very impressed with my progress (or I guess lack there of) and is supportive of me getting pregnant.
4.) My Doc believes that I caught this extremely early and it may be many years before I have any more problems.
5.) Although the meds cause painful, itchy whelts on my body, that is my only side effect.

Of course life isn't all roses. I think I am still in somewhat of a denial. Every so often I 'realize' that I have a chronic illness. Sometimes I can forget and then I am a work and get a patient who is debilitated due to MS and it's like a punch in the gut. I still haven't read one book, researched any new treatments or joined the local chapter. I think for me, a certain amount of denial is necessary. I can't be consumed with thoughts all the time or I will crumble.

Of course there are days I am angry...like knowing that if I hadn't been diagnosed I would most likely have an infant in my arms now, or be well into my pregnancy. I just have to focus on the positive though. If it hadn't found it early, there would be more time for it to attack my nervous system before starting the medications to slow its speed. Hopefully I caught it early enough that it will be many, many years before the MS truly impacts my life.

I will be walking in the MS Walk this March. Last year I raised over $700. So far I have raised $520. With the economy I am very happy with what I have made so far. Wish us luck and when the walk does happen, I will be sure to post pics :)

Had a Crappy Day Today

I woke up exhausted. So tired that I picked up my blanket and pillow and walked downstairs, plunked myself on the recliner in the living room and remained half-asleep all morning long while the twins played around me. I got up here and there to feed them, change them...etc, but for the most part I slept. Then at 1pm I brought them upstairs to nap and napped with them. We all woke up at 4:15p. I don't think I have been really up for more then a couple of hours today and I'm still tired.

With the MS I often go through periods of Fatigue. I think I may be having one. One time I felt fatigued for about a month but since then it's usually just one or two days. I think its my body's way of telling me to relax and rest a bit since I tend to do way too much.

Of course it's back to work tomorrow (UGH) and Friday (Double UGH) but then I will have a few days off again. I will try not to plan much and keep those days off as calm as possible.

My Yearly Walk for MS

Well I guess it's hard to say yearly since this will only be my second year, but I plan to continue walking. Last year I raised over $700 for the MS Society. Since the economy is considerably worse right now, I have a goal of $500. So far I have raised $250! The walk is in March so I have more time to reach this goal.

I have recruited a few friends to walk. Me and the husband of a friend who was diagnosed the same week as me are co-captains of our team. The team as a whole should do really well. I think we raised over $3000 last year. I'm not sure what our goal is this year but we have already surpassed $1000.

Sometimes its hard to acknowledge that I have this disease. Even every night when I inject myself with super painful drugs I manage to stay in some degree of denial about my diagnosis. I am typically someone who researches the shit out of everything but with MS, I haven't looked up one thing or read any literature. I think right now I still feel like the less I know or admit to, the better I'll be.

Holy F'ing Shit!!

I know I have been self destructive. I know I have been out of control. I know I have been eating way beyond what any normal person should. What I didn't know was that in the last 2 months, my behaviour has gained me twenty pounds. I am so disgusted with myself. I hate myself. I don't even know where to go from here.


I have to do something. I have decided to call my regular doctor and change my meds. Obviously what I'm on is not controlling my depression and anxiety. I just hope that I don't end up getting the run around. My GP not wanting to prescribe anything, referring me to a psychologist who charges me tons of money and won't prescribe me anything without the therapy. I just don't have the time or patience for the run around.

I might even start going back to my nutritionist. She seemed to help me. She kept me honest and accountable.

The reason I found out what I weighed is because I had a neuro appointment today to follow up my MS. My doc was impressed with how well I was doing. He said my neuro exam was completely normal and that unless I had problems I didn't need to see him again for 6-8 months. We talked about me TTC and all he said was that he recommended going off my meds while pregnant but that he knew many moms who stayed on it while pregnant and he didn't know of any issues. I am still undecided as to what I will do. I Have decided though that I need to get to a certain weight before TTC so January may not be in the cards after all.

I have three dinners and two events in the next week or so, so I have decided come October 1st a major diet will hit this house and hopefully by early next year I will be where I should be.

On other news, I'm pretty sure tomorrow will be CD1 so I will start charting, temping and using OPK's in an attempt to learn my cycles as well as I can so that when I TTC it will be as quick as possible. Hopefully I can get my life back on track before then.

So tired this morning

This morning I woke up more tired then when I went to bed. It's one of those mornings UGH. I spent it half asleep on the floor while the twins played. I don't know if it's the MS or just life. Both my arms ache like crazy - my shots have been in my arms the last 2 days and I have had a slight headache. Days like this really make being a SMBC a challenge.

It doesn't help matters that my house is a mess and M will be here this afternoon. I will take a short nap and then clean like a crazy woman this afternoon.

Sometimes MS sucks

Lately I have felt like I'm in a funk. Not depressed, just foggy and disorganized mentally. I also found today that I am feeling really tired again. To top it all off the numbness and tingling in my hand is worse. It really ticks me off because (1) it just sucks to have a limb that is numb but more importantly (2) I worry about what this means on my future plans of TTC. I have an appointment with my neurologist in September so I can discuss it with him then. If the symptoms continue to get worse, I'll call and make an appointment sooner. Times like this, it is difficult to give myself a shot every night - which stings like HELL - when it doesn't seem to be making a difference.

Background on me :)

So I always hate it when people start blogs and then include a little story on how they got to the point of starting a blog. I have many friends who blog and thought it would be a great place to write about my thoughts and feelings in this crazy thing I call life.

I will start my blog by giving a brief history of the last few years. Kind of a quick glimse into my past and maybe some insight into how I got here.

In my early 20's I decided it was time to start my family. I had a job, a house and financial security. Since I was a teen I never saw myself as married and always had the plan that I would use a sperm donor to create my family. When I first tried to start my family I went the adoption route. After jumping through all the hoops I took my son, Z, home from the hospital at 2 days old. He was the love of my life! I felt for the first time a sense of happiness and belonging. Sadly one week before his termination was set (6 months) his bio family changed their mind and actually signed him over to another couple. My heart was torn in two and I never thought I would go on.

I decided shortly after I had to be a mom and adoption was not for me, so I turned to TTC using my first plan, donor sperm. I inseminated myself at home. No docs, no meds, just me in my own bed, monitoring my cycles with OPK's. On my third attempt - after horrible timing - I got pregnant. I was shocked to realize 11 weeks later there were two!! After a horrible pregnancy with hyperemesis gravidum I delivered my son and daughter at 36 weeks. They both were completely healthy and came home with me two days later.

My life has been a wonderful blur since. There is nothing that makes me happier then my life with them. Initially after the pregnancy I experienced I decided they would be my only two. Well when they were 10 months I was able to buy ten more vials of their donor. Thats when my plan for #3 hatched.

I decided I wanted them three years apart, so I planned on TTC again in May 2008. I had everything planned and started charting the September before. Then in January I woke up with numbness in my arm and hand. Many weeks and tests later it was discovered that I have Multiple Sclerosis. It was a devastating diagnosis and derailed my TTC plans.

I need to now wait to determine what type of MS I have, and how well I respond to the meds. My neuro wants me to wait until January 2010, but I have agreed to wait until January 2009. If everything is status quo, I believe I will start TTC my third child at that time.

Of course I am nervous considering I will be the sole provider and caretaker for my children and now with a diagnosis like MS that puts some question to my abilities. I have done tons of research and it appears that while though I may be setting myself up for some unique challenges, it does not seem like this needs to put my dreams to an end.

So basically this will be my blog. My crazy life with K&S, working, dealing with my MS and my continued want and concern for my next journey - TTC baby number three :)