Some corrections, and a work update

Good Morning, I wanted to start off by making some corrections to previous posts. The first was my description of how Mestinon works. It doesn't send more messages, it actually allows the acetylcholine to hang out at the neuromuscular junction longer allowing it to have a better chance of hitting on a healthy muscle receptor. I'm super tired today, which leads to brain fog and since I didn't write them down I will have to post the rest of my corrections at a later time. Oh, I remember one more, I had asked for prayer for my father in law, keep them coming. His surgery was supposed to be this week, it is now going to be at least 3 weeks out, maybe more, pray for a cancellation.

Our family had a wonderful day yesterday. We had a birthday party for John. It was a pool party for him and four of his friends. We timed it between check out and check in so they had the whole pool and a lifeguard to themselves. Five 10 year olds each armed with two squirt guns, goggles, and a large indoor water slide = FUN!


Back to the subject of work. My big meeting went very well. I will be putting in more hours because it has been decided that I may work from home!!!! The difference between waking up, logging on, forwarding my phone, taking a real rest during lunch hour, and hopping back on for a few hours versus waking up, getting dressed and prettied up, driving 25 minutes to work, and then working will give me a MUCH MUCH better chance at returning to work healthy and productive. I will start my new schedule tomorrow. Thank you everyone for your support, even though most of you don't know how to sign up to follow the blog:) At least you email your feedback.

Lots of Love,
Jen

What a week, and it's only 1/2 over...

See, I told you once life started happening I would not be able to fullfill daily blogging. I won't be hard on myself though because being too busy to blog about my illness is a good thing. I have been enjoying the energy that the IVIG has afforded me. There is a new pattern to my day that I have come to recognize and enjoy. Instead of waking up exhausted, unable to do much of anything and trudging through the day pushing myself to do the most mundane of tasks, I am having real stretches of feeling, healthy! This is so refreshing, I was skeptical that it would ever happen again and here I am one week later like a new person. Mornings are still a bit of a bear but give me a coffee and a Mestinon and I can take on the world...for a few hours:)

I have been working a few hours a day to get back into the swing of things. Today was my busiest day of all with work in the morning, John's spelling bee this afternoon, and more work upon returning home. I am so proud of my son, he made it through three rounds and spoke confidently each time up at the mike. We congratulated him by bringing him home with us at 2pm...nothing can make a fourth grader happier than leaving school an hour early and he got to hang out with mom and dad for two hours without his little sister, can't beat that. Tomorrow we will celebrate his 10th birthday. Looking back 10 years I can't believe how quickly time went by but beyond that, how much we have been through and how blessed we truly are.

Prayers are needed for my Father In Law. He will be undergoing major surgery next week unexpectedly. He has done so much for us during my illness. Nothing would make me happier than to be healthy enough to pay him back.

That is the blessing in having been through hard times. You get to see how important the people in your life are. This week I had an opportunity to help out two other sufferers of Myasthenia. They too need prayer. One is a girl whom I do not know other than as a member of an online support group. She too was diagnosed in October but she had not suffered any extreme symptoms that require hospitalization. She posted a concern about breathing difficulties and slurred speech and I urged her to seek prompt medical attention. After I posted I thought, maybe I am over reacting, I was worried I was pulling too much from my own experience and I hadn't seen any follow up postings by her. Last night I learned that she followed my advice and when she got to the hospital was admitted and treated on the verge of a crisis - also known as respiratory failure. She thanked me and I felt so relieved that I was able to help someone.

That is what I have to hold on to. This is what gets me through all of the tests, needles, meds, side effects, symptoms, and on, and on. If my suffering can help one person then it is worth it. The other person I was able to help is going through a very rough time. We met on our search for more information about MG and found out that we have similar disease patterns. She too was hospitalized this week but sadly is not receiving the care she needs and deserves. She is one of too many people (self included) with MG who has had their diagnosis challenged by an arrogant neuro. She was told it was all in her head, even though the blood tests and all of the clinical tests confirm her disease. I was not able to help her receive better medical care but I was able to reassure her that she wasn't crazy and that she was worthy of being treated with compassion and dignity.

I am appaulled at the number of neurologists who I repeatedly hear are treating patients as whiny psychopaths. They have called patients names, accused them of pretending to be sick, and refused much needed treatment. All of these things happened to me on my journey. It makes me feel that much more blessed to have found a stellar medical team to treat me. It was a rough road getting there but we made it through and I am reaping the rewards. I pray this week for those who have yet to find a doctor to give them the proper treatment and respect they deserve and for those doctors who are ill equipped or simply aren't interested in treating MG to just tell the patient that it isn't their specialty and recommened a collegue.

That is all for now, I have much more to say but it will have to wait...American Idol calls..woo hoo!

Back in the saddle....and I didn't fall off!

Well, I just returned home from my first day back at the office. I would be lying if I said it didn't tire me but all in all, I am feeling quite well. I am taking this week to sort through emails and files so I can give my all when I start taking requests next week. I am working at my parent company this week and I am eager to get back to my office. I seemed to tolerate a few hours okay this morning though by the time I left, I was seeing double.

I have a few major meetings this week. Why is it at the tail end of any kind of drama in life, a few more hurdles are placed just before crossing the finish line? I have seen this time and time again, just as I am feeling better and ready to go back, I have to put out a few fires that developed in my absence. I am confident that things will go well but I am a little nervous about it.

As far as the myasthenia is concerned, I am feeling 200% better than I did last week. I am feeling my symptoms flare when I exert myself but rest allows for a quick recovery, as opposed to the downward spiral it was throwing me into. I am hoping the benefits of the IVIG will last through to the next treatment date because the way things are going, I am going to have to give 150% and the nature of this beast usually allows for 50% if I'm lucky. Here is to a positive, productive week.

Feeling good...

I'm always hesitant to say this as the past has shown it doesn't take much to jinx yourself in this family, but I am just going to throw it out there anyway. I am feeling great. I am optimistic that my meeting at work tomorrow will go well and if prayers are answered I will be hooked back up to society on Tuesday. Since my diagnosis and learning my disease course I have become a use it before you lose it gal. So, I did the dishes and mopped the floors today. The mopping was not a good idea because I hit a weakness wall and now have to sit with my feet up for awhile but I don't feel like I set myself on a permanent set back, so things are still looking up.

I am also very proud to announce that John, my soon to be 10 year old going on 18, was in the top 6 out of 30 in his class and will be participating in his first spelling bee! Way to go John, you make your mama proud. I cannot believe my first baby is going to be 10 this week...surreal.

I will try to keep posting daily but I lose my discipline when life starts happening. So, secretly I guess you could say I am hoping I am not posting daily, that means I am feeling well(er). Ah, making up words is fun. Okay, so have a blessed Sunday and I will post more as soon as possible...

A special thanks to all the good nurses out there

I am happy to report that this was the most uneventful IVIG treatment I have received to date. I couldn't have asked for a better nurse. Cynthia is a pro in her profession. Since June I have had multiple IV's and blood draws monthly. Every single time the vein in the crook of my elbow was used. This is troublesome for two reasons. The first being that there is now a ton of scar tissue on each. The second that any movement of my arm causes pinching, pain, or the IV to stop dripping. Getting back to my original point, Cynthia used a vein on the inside of my forearm and not only did the IV line not bother me at all, I didn't feel it going in or coming out.

This may not sound like that big of a deal but for people like me with chronic illnesses, requiring repeated treatments, it was a downright miracle and answer to prayer. During the infusion I suffered zero side effects and I am already starting to feel the benefits. I am crossing my fingers that I wake up tomorrow headache free, I am optimistic due to the fact that I followed the same protocol I used during my last hospital stay: hydrate, hydrate, hydrate and protein, protein, protein.

I had a wonderful evening with my family, a nice chicken and rice comfort food dinner, followed by a board game and a movie. I am blessed to have such wonderful children and a loving husband. I am still having a little trouble with my eye and I'm exhausted but today was a great day. I'll post more tomorrow, here is to a restful night's sleep.

DDoouubbllee VViissiioonn

This morning's post will be short for two reasons; I had to take a full dose of benedryl and the MG has reared it's head with a vengance so my arms are fatiguing out and I have double vision. I think I will cover that aspect of the illness today as 90% of myasthenics will suffer occular symptoms. For me, it starts so subtlely that I don't notice it until I start to bump into things and knock things over. When it first comes on, it only affects my depth perception. As it progresses it gets to the point that I truly see double.

The best description I can give is to compare it to what I used to do with my eyes on purpose in the early 90's when those 3D posters were all the rage at the mall kiosks. Do you remember these? They were really tacky in the art sense but fun to look at. Well, now my eyes do that when I don't want them too. I remember the first time I was able to see the 3D dolphins how I had to relax my eyes, I guess this makes sense in MG because those eye muscles aren't getting the normal message they receive.

I'm getting drowsier by the minute and my nurse should be here soon. Pat is staying home with me in case I need anything and my grandma is bringing lunch. I'm nervous and excited. I think this will work great but I am receiving triple the amount I had infused in the hospital so it will be a little different. Pray for me! I'll post when I have an update and can see what I type.

Ta Ta for now,
Jen

How does MG affect me?

I thought it would be a good idea to explain what this disease has done to me. Medically it is an autoimmune disorder where my immune system attacks my muscle receptors. This means that when my brain tells my arm to lift up and sends a nerve impulse to the muscle sometimes the message makes it to a healthy receptor and sometimes it ends up at a damaged receptor resulting in the inability to lift my arm or at times it is simply more difficult to lift my arm. My brain, nerves, and muscles are all there and the neuromuscular junction has many receptor sites to hit but the fact that my body thinks the receptors are a virus doesn't give my system the same shot at making the connection as it does in a healthy person. I liken it to a marrionette. With all of it's strings a puppet master is able to move the puppet in any way he/she commands, if you start cutting strings, the puppet becomes a rag doll. Is anyone else humming Pinnochio music in their head..."I've got no strings to hold me down, to make me smile, to make me frown:)" Thank goodness for parentheses and colons:):):) Okay so that is the technical mumbo jumbo dumbed down.

People with myasthenia can have different muscle groups attacked at different times. In my case my diaphragm was hit the hardest which affected my breathing and subsequently the only hobby I am passionate about - singing:( The first flare up I had also went after my wrists, grip, and arm strength. To apply it candidly, if I wanted to unload the dishwasher the first dish would feel normal to lift, the second like a 5 pound weight, the third like a sack of potatoes, and the fourth I would drop if I attempted it. With Myasthenia, the more you use the muscle being attacked the less it responds. It is possible to recover from an attack with rest and medication, primary immunosuppresants and IVIG or Plasmapherisis. Mestinon is a go to daily med for myasthenia which is a great help but it doesn't stop the destruction of the muscle receptors, it just sends more messages from your brain so there is a greater chance of the message making it to the muscle.

My second major attack went after my ankles and legs and I was unable to walk at all for 48 hours. Even after 5 days in the hospital with IVIG treatment I could not lift my foot off the ground and was sent home with a walker. Thankfully I recovered and by the end of December was able to ditch the walker except for bad days. An extra special thanks to Pam my visiting physical therapist. Her determination to help me recover and her compassion to learn about Myasthenia made a very difficult time a little easier.

Which leads me to the next part of the daily struggles with this illness. I tow a fine line between keeping active enough to maintain muscle mass and overdoing it resulting in muscle attacks which lead to atrophy. I have days where I feel normal for four hours and like I am paralyzed for the rest of the evening. I have days where I have energy for 8 hours and then I start tripping on my toes. The most embarrassing symptoms for me are when it affects my speech and my eyes. I end up with slurred speech, a hoarse voice, my mouth stuck in a 1/2 frown drooping on one side, and unable to open my right eye. It has affected my freedom in that I have frequent bouts of double vision caused by minor misalignment of my eyes from the muscle weakness making it scary to drive. Thank God for my in-laws, they have done more than I can ever thank them for. They have picked up my kids, gone to the grocery store when I couldn't tolerate the walk, babysat me so I could take care of my children while Pat goes to night class, brough meals, and on, and on.

And I have to give equal thanks to my Grandparents for the many hospital visits and nightly phone chats, my dad and step-mom for sitting with me during my three hour in hospital IVIG treatments and the many trips back and forth to Ann Arbor (and Trader Joes:), and my sister for working at my GP's office and making seemingly impossible communication possible.

It is hard to explain to people when i look normal why I have to park in handicapped parking, why I have to sit alot, why I can't talk on the phone for long periods, that going out for dinner or a long car ride could mean I can't do anything for the next few days. What tugs at my heartstrings the most though is how little I am able to do with my children compared to last year. Last year at this time a typical day consisted of getting up at 6am, dropping the kids off at school, working 8 hours, picking the kids up, stopping at the grocery store, going to the Y to work out and let the kids play or swim, coming home and cooking dinner, doing laundry, dishes, etc... Now I am exhausted if I work for 2 hours or put clothes in the washer and forget about carrying baskets. Instead of an hour on the elliptical three times a week, frequent walks with the kids, maybe a night out at karaoke, I strugle to do my physical therapy which consists of sitting and raising my leg 10 times and doing bicep curls with soup cans.

With all of that said, I am thankful that I have a wonderful doctor overseeing my care. I am thankful to have friends, family, and coworkers who have supported me in spirit and strength. I am thankful to my Church community for the meals and the phone calls just to check in. I am thankful to have such a loving and supportive husband to ride this rollercoaster faithfully (though not always joyfully)with me. And most of all kids who keep laughter and love in our home every day. They are content to play board games or watch a show or put on a show for me, this may help their future acting careers:)

So, that is basically how MG affects me. If you know someone with MG or have MG they may share some similarities but none of us is the same. We each face separate challenges, have separate strengths, respond differently to treatment, but we know emotionally how the new normal feels.

Home Renovation -

Well, not a renovation per se but there are changes coming today. I am sitting in my recliner waiting for UPS to show up with my hospital equipment for treatment. I spoke with the pharmacist from the in home IVIG provider yesterday and found out that I will be receiving the following:

An IV Pole
IV tubing and needles
A sharps container
IV Benedryl
An Epi Pen
Tape that I hope I am not allergic to
My medicine
A laundry list of things I don't remember

This is all a bit overwhelming for me but it is the way my doctor and I wanted it so I'll just have to roll with the punches. I had to laugh on the phone yesterday when the pharmacist told me how to handle the medicine. For those of you who do not know, IVIG is a human blood product. Basically, they filter out healthy immune cells from donors to put in my system and override my messed up immune cells that are attacking my muscles. Anyway, the pharmacist said to refrigerate it until 12 hours prior to infusion and then let it warm in a safe room temperature setting. She said do not microwave, put it under warm water, boil it in a pan, or (and here is where I laughed out loud) put it in a diaper warmer. I said "what???" She laughed too and said these were all things other patients had done and that it would destroy the medicine...oh, it never ceases to amaze me.

It reminded me of a story my aunt shared with me. She is a labor and delivery nurse and she used to volunteer at the free clinic once a week. There was a teen girl who had gotten pregnant and was surprised because she said she was using jelly. My aunt asked what type and she said Smuckers grape flavor. I don't claim to be the smartest sandwich in the basket but these stories always give me a good laugh.

In addition to my new treatment plan, I am attempting to go back to work on Monday. This was supposed to happen three weeks ago but my unexpected hospital stay put a cramp in my plans. I am praying for strength and stamina as our family needs my income and I need to get out of the house for my sanity. I am going to ease back into it but it didn't go so well the last two times. I am a bit more optimistic now that I have a solid medication protocol, we'll see...

Today is a good day

Today I am happy, weak but happy. I just found out that my in home IVIG treatment will be covered by insurance and we can start on Friday as scheduled. This is good for a few reasons:
1. I will have two days to suffer the worst side effects of treatment before attempting to work
2. I will have the same nurse every other Friday, her name is Cynthia, same as my mother who passed from cancer in 2001 and my daughter. She sounds very nice and i like her name. All she does is IVIG so it should be night and day compared to the two hospital stays where the nurses admitted it had been years since they gave anyone IVIG.
3. I will not be exposed to other people's germs, after finding out I had the swine flu for the entire month of December I do not wish to get sick again. I know having young kids this is not entirely preventable but my immune system just can't fight stuff off right now. And to think back to how much I persued getting the vaccination...all for naught!
4. I get to relax in my house, in my pj's, and not worry about getting a ride after my 6 hours of treatment.

With that said, I am nervous about having treatment so often, I think my veins are shot from the four hospital stays I endured this year, but it really does help me. I couldn't open my right eye, swallow, or walk when I had my first treatment. Now I can do all of those things (most of the time) after my treatment and then a few days before I'm due for my next I start going downhill. The goal is to have it even out so I am having less and less weak days and I am very optimistic. I know this disease is incurable and has a mind of it's own but I think I am in the most capable hands. It only took three bad experiences to get there but considering the average time from symptom onset to diagnosis is 2 years and I did it in 6 months, I can't complain.

I was feeling so good the past week and then this morning my illness hit me in the face. The old familiar feelling of weakness that wasn't there when I went to bed last night was here this morning. I couldn't lift my arm to hit the alarm or open my pill bottle. Once my hubby got me a Mestinon I started feeling better but not like yesterday. It doesn't cease to amaze me how quickly I go from normal to disabled. Here is to treatment working.

My New Normal...

Well, I never thought I would be one to blog but life has changed a bit for me this past year. I went from being a very active wife, mother of two, and full time employee to the sufferer of an incurable neuromuscular disorder that took six months to diagnose. My husband has had to carry me to bed, take over the duties I identified with for 10 years of our marriage, and add caregiver to his many titles. I am not here to complain, judge, or recommend treatment to others; I am here to share my story candidly and truthfully as I am the only one to have walked in my shoes. I hope this helps others not feel so alone but I warn you not to compare yourself to me for two reasons. First, Myasthenia is an orphan disease. Second, it is called the "Snowflake Disease" because no two patients follow the same disease course. With that said, there are things you may identify with or things I have learned through hours of self study that I may help with and I am happy to assist in any way, shape, or form. I just hopped on this rollercoaster and through my trials and tribulations I hope to be the strongest me I can be.