29 Gifts - I have taken the challange

And invite you to do the same. About a month ago, I was reading a magazine article about a woman close to my age who was diagnosed with MS one month after her wedding. After a downward spiral of negativity, she spoke with a close friend and alternative healer who encouraged her to give away 29 things in 29 days and how it changed her life for the better. I thought it sounded like a good book to check out, unfortunately since I haven't been driving (let alone shopping), I did not make it out to get the book. In truth, I forgot about it altogether.

About a week ago, my Grandmother, who is always thinking about other people, saw an interview with the authot, Cami Walker, on television. She ordered 2 copies immediately, one for me and one for her dear friend Kay who is suffering from chronic pain. I received my copy in the mail on Friday and I devoured it. I decided to take the challenge and signed up online Friday evening. I started my 29 days of giving yesterday and had one of the best days at home that I have had all year.

I encourage you to check it out as well at www.29gifts.org and the first person who shows interest or a need I will give my copy to. I think things happen for a reason and this new way of living will heal me, not cure, but heal. I had a wonderful day yesterday. My gift was to push myself a little bit further and give my family a normal day like we had before I was sick. I did not sit in the recliner all day. I gave my husband time off by doing the dishes (this was a 4 hours project but I did them:), I did the laundry (1/2 of it), gave Cindy a bath, Pat got to take a nap, John had friends over, Cindy and I read books and played games and I just ate it all up. The peace and joy that was in the house, the calm, the absence of worry is priceless. It is truly easier to give from a place of love and purpose and it changes your perspective.

I did pay for it today a bit. I had to sleep a little longer and my right eye is weak but that's pancakes for what I received in return. Happiness and calm in those whom I love more than anyone else on this planet.

i dare you to take this challenge and let me know how it works in your life.
Jen

Expectations...Reality

Today I thought I would write about expectations vs. reality. Mine, my doctors, friends, family, work...
Mine:
Expectations-
Ok,so I completely expected that by now, two months into the new treatment plan, I would be close to normal. I would be ready to work 8 hour days, maybe from home but still expand my hours. I would be able to transport the kids arounds. I would be able to have lunch with a friend if I was so inclined. And, yes, I would be able to sing on stage again.

Reality-
While I'm pleased as punch that I have made it a full two months without a repeat visit to the hospital I feel pretty weak and tired most of the time. I can breathe and swallow but sight and strength are not regained to an acceptable level in my humble opinion. I am still having difficulty managing 6 hours of work from home without it taking everything out of me. I cannot drive most of the time due to weakness/vision issues. If I go to lunch I'm out of commission for a whole 24 hours. Forget about singing onstage, I can't even sing in the shower. I either run out of breath or my voice is so hoarse it cracks (I have had a few days where this wasn't the case but..ugg!)

My Doctors:
Expectations-
I really don't know, I think we are the learning/guessing process of my disease course. I see my neuro on Tuesday and I'm anxious to see his response to my response to treatment.

Reality-
Will have to post that next week

Friends and Family:
Expectations-
I am getting two sets of expectations, one is my loved ones expect me to be better than I am. Another is fear at how bad it really is...well I guess those fall under the same umbrella. I feel like I am constantly letting people down by not being able to follow through on things that I want to do but when the time comes I just can't.

Reality-
I think my support is getting tired of picking up my slack though he does it lovingly. Thankfully while this is going on, people that weren't available to help initially are coming out of the wood work.

Work:
Expectations-
Same as mine listed above. They want me healthy and full service but they are being very kind and patient during this transition period.

Reality-
Every day I am asked at least 3 times when I will be back full time or when I will be back on site. I know it is because people care but it is a constant reminder to me how far back I am compared to where I want to be.

I think I need to just let go and realize that I'm not steering this ship anymore - come to think of it I never was. I was the student driver for most of my life with God at the override switch. I now have to sit in the backseat and have as good of an attitude as I can while I wait to get better and trust that things are happening for a reason. Thanks for reading, having a down day after buying a phone on a 10 minute shopping spree yesterday led to the complete knocking out of my leg muscles, and this time it wasn't just my ankles but clear up to my thighs.

Going off on Facebook,,,and a tiny MG update

So, this one is a bit off topic but it has been bugging me. Well two things have been bugging me. One, I hate, hate, hate the new Facebook layout. Two, why are Farmville, MafiaWars, Flower garden and quiz updates worthy of postings on the News Feed? Addressing my first annoyance includes the fact that for whatever reason, the new layout grades what status updates are the most news worthy. There was probably some egghead who was paid $1000's of dollars to develop software to decide what status updates post first. The result is instead of finding out that a close friend decided to go back to school, or someone has the chickenpox, or a new love interest, or a fun take on a news story I didn't catch, I now know how many cows, pigs, and chicken's people have aquired on a cyber "Sim" world.

Now, I don't really care if you just absolutely have to have 100 acres of cyber farmland, or you get your rocks off by doing a drive by on your first kiss. However, in as much that I don't care if you enjoy it (I promise it won't affect our real relationship) I really don't care what you accomplished in your imaginary game state today. It is a time and space sucker for me because I now have to scroll through all the B/S. In fact, I bet if I polled all of the cybergeeks who are nearest and dearest to me, they don't really feel the need to shout from the rooftops how many petunias they were given today in their garden.

I love Facebook, I love how many people it has re-connected me to. I love how many people I now keep in weekly touch with versus bi-annual touch. However, I really loathe the application updates on my news page. Okay, that's it, I'm done, just had to get it off my chest.

So for the MG, the IVIG on Friday went effortlessly. Love my nurse still in that she is the best IV starter this side of the Alamo. However, she is not much of a talker - I obviously am. She also doesn't watch television...none! And she is extremely conservative. I am a bit, okay not much, just on my personal beliefs but never affecting those around me in an uncomfortable way. I cannot catch up on any shows without sighs and sometimes comments, that can make 5 hours go by realllly slowwwly. Did I just say 5, not 6, yes 5 hours??? Why yes I did!!! I can tolerate a smidge higher infusion rate so I am done by 2pm instead of 3pm...woo hoo...yes, it is a big deal:)

As far as my overall illness...I don't know. The last few weeks have seen some setbacks but I have things to pinpoint that on. For starters all the medical stress in the family rubbed off on me, I just care too much I guess but I will hold on to that with all I've got. It has always defined me and MG can't take my empathy away. My empathy can make the MG worse but it isn't like my bi-cep where the disease can just target it and take it out of commission. I have been much better mentally now that my loved ones are out of the hospital, not on the verge of a heart attack, and not facing cancer (different people...I know...confusing). However, my little 3 year old petri dish brought home a nasty bug and that has set me back once again. I just started my Z-Pack, praise God for good doctors, so I hope I can kick it to the curb quickly.

I see Dr. Teener, my neuro at U of M, next week and I am excited to see what he has to say. I am going to review my blog to put together a picture for him of how I have been doing. I don't think I am at the point to reduce the frequency of treatment but I am optimistic in the fact that I stayed out of the hospital for two weeks straight...knock on wood. I thought of giving that up for Lent...yes, staying out of the Hospital, but I don't think that is going to fly. So, what I am giving up, is asking why. I am just going to live and enjoy. Why doesn't matter, it doesn't change anything, so I will just be. I have had greater peace with this new outlook. I just need prayer support that this is the first Lent that I don't mess up my sacrifice...not too much longer to go;0)

Love to all my friends and family,
Jen

This just in...Jen Walsh just aquired 50 chickens, has recieved 50 valentines, and do you know what question she just answered about your personality? This and more at the new...and improved Facebook

Holy Cow, it's that time again...

In less than 48 hours I will be recieving another treatment. The last two weeks have flown by. I wish I could say i haven't been blogging because I felt so fabulous I didn't have the time but that would be a flat out lie. I really didn't catch any relief this last time around but on a positive note, had I not gotten the IVIG, I am certain I would have ended up back in the hospital.

With the combination of the allergic reaction, the stress of my father in law's upcoming open heart, and worrying about my hubby and the rest of his clan I don't think I had a fighting chance. Well, the surgery is over and was a success so I am feeling much less stress, just weakness as I lead up to my treatment on Friday.

The last two weeks have been filled with many tough mornings getting out of bed, major vision issues, and leg weakness. I got a bit emotional on Monday which is very out of character for me but I was so weak that I couldn't make it to my son's conferences and I slept for 4 hours in the afternoon. Sometimes I feel so defeated. I just want to be a good mom and a good wife and when I don't have a say in the matter, well lately the waterworks start.

I got through that okay and have my confidence back that there is a light at the end of the tunnel. I almost thought about calling to see if I could get my treatment moved up but Friday works well in that it allows me to suffer any ill side effects over the weekend so I will leave it alone. Now, I just have to get through the next day and a half....

Life happens...it just does

As many of you know, this has been quite a week for me. It all started with my IVIG on Friday and the allergic reaction to the tape. I really thought I would bounce back but I think between that kicking my bad immune cells off and the stress of close family members with major medical isssues I don't think my system had a shot for this treatment. Pile on top of that day after day after day of snowstorms to deal with as a travel agent and boom...I'm down at the bottom of the hill.

I wanted to write this post to explain in a little more detail how this illness will effect me moving forward. Those of you who are nearest and dearest to me - and have still not figured out how to subscribe to my blog:) have responded to my struggles this week with grave concern. While I truly, from the bottom of my heart, appreciate the level of love and worry, I worry when you worry. I can't help it, it's just how I am, I am empathetic to the Nth degree. If I could remember back to my birth, I was probably crying because I was worried about the pain that the labor caused my mom.

Anyway, back to the reason for today's post. I know that the literature says that myasthenics can go into remissions and that treatment can manage the disease. This is all true. However, it is still a disease and management is a quality of life issue, not a cure. For example, two treatments ago I had a solid 7 day run of very mild symptoms where I felt near normal. It was wonderful and I am optimistic that moving forward this will be the standard result.

Unfortunately, this week, a little thing called life got in the way of stellar results. It is okay, I am not ready to throw in the towel or say that the treatment does no good. In fact, I am certain had this week happened without the treatment I would be right back in the hospital again. I can breathe, I can swallow, these are the two symptoms that led me to dire straits and multiple hospital stays. But that didn't happen this time, even though I had a horribly stressful week. So I became very fatigued - I can sleep. So in the evenings the double vision set in - I can rest my eyes. So my legs became weak - I have my walker (and they stayed strong enough to continue my physical therapy exercises).

So the moral of this post is - Life Happens. It can be boring, joyful, sorrowful, stressful, funny, exhausting, and whole host of other emotions. I love my crazy life. Does it sometimes get in the way of how I feel? Absolutely, but I bet it gets in your way as well, it just manifests itself in different ways. And without it there wouldn't be much of a story, now would there?

Lots of love...and optimism,
Jen

Two days downhill, on the upswing again

Had a little setback on Friday. See, when you are chronically ill and exposed to medical supplies over and over and over again, you can develop an allergy. This happened to me this summer with the IV tape called Tagaderm. It is the clear thin plastic square tape that goes over the IV tubing. My skin reaction starts with my arm turning a red white and purple marbled appearance and then developing tiny red bumps that end up spreading to my chest abdomen and thighs. Benedryl doesn't touch it, only high dose prednisone, which we learned makes me weaker. Low prednisone makes me stronger, too difficult to get into right now. At any rate here is what happened...

Cynthia arrived at 9am, ready to roll, she did another stand up job of painlessly getting the IV in and I was READY. I was really falling back into the MG abyss and wanting to reap the rewards of the IVIG. She was able to push me up to a higher flow rate so we were finished by 2pm which was wonderful as well. Gave me a few hours rest before my toddler was home from the school carnival.

I'm getting off track, back to the reaction. For some fun reason, even though I am allergic to the Tegaderm, it is included in every IV starter pack. The pharmacy had mailed the tape I'm not allergic to but it was in a separate bag. At about 12 noon I went to the bathroom and my whole arm was marbled. Cynthia removed the bad tape and replaced it but it was too late. So then I had to have a mega dose of Benedryl. Between the benedryl and the allergic reaction (which set my immune system off, which increases the muscle receptor attacks) I ended up super duper weak and fatigued. Thank you Pat for being a single dad for 28 hours. That is about how long I slept give or take a few times to wake up and use the restroom, take my meds, or eat. I'm feeling much better and I am certain tomorrow will be a good day.

Will post more later. Have a Blessed Sunday!

Had to dust off my wheels...

I officially had to accept my state of weakness and take the walker out today. I have a love hate relationship with it. I love that it allows me to get around without the constant fear of falling but I can't get over the stigma of it. For some reason it was way easier for me to sport the oxygen tank out in public. The walker? Forget about it! The only time I used that outside of my house was at the doctor's office and that was too much to take.

Tomorrow couldn't come too soon. I don't look forward to six hours hooked to an IV but knowing the results I will get I am actually excited about it. I know if I didn't have this new treatment plan, instead of working on Monday I would be headed for the hospital again. My chest is getting heavier with each breath, I am avoiding the phone like the plague so I don't exhaust my diaphragm, and I am looking at my home knowing it isn't cleaned to my standards but the nurse will just have to understand.

All the medical reports on Myasthenia say that there is no cure but there are many treatment options and that with proper medical care myasthenics can lead a normal life with a normal life span. I would like to look the word normal up in a Neurolgy textbook. From my experience this past year it reads something like this -
NORMAL: - Any patient that is not actively dying

Seriously, this is not normal. It should not be often that one stumbles into walls, loses their footing, or has their children ask what is wrong with their eyes unless one has consumed too many adult beverages on multiple days/nights of the week. If the authors of the informational medical posts wanted to acurately tell patients what to expect they would simply say - "Myasthenia - It probably won't kill you, but you will feel like it is over and over and over again."

Okay, sorry for the doom and gloom but there is so much I want to do and I just can't. I want to be able to push myself again, not tiptoe around hoping I don't overdo it and get sicker. UGGG-if anyone wants to join in on the pity party come on over.

I know you can't see it but I'm smacking myself now. I really don't have it that bad. I have food, shelter, water, electricity, heat, healthy kids, a happy marriage, a running car, money in the bank, clothes on my back, even cable and internet. Things could be waaay worse and I am very thankful for what I do have. I wouldn't trade it for anything not even getting rid of this illness. But, that is what this blog is about, the real nitty gritty of this disease so some posts will be fun and upbeat and some will be a big fat downer. It is what it is and today it is WEAK! You are going down tomorrow MG!

Not outta the woods yet...

Well, I guess one week to life changing results is too good to hope for in any circumstance. Yesterday I found my eyes falling, double vision returning, fatigue so bad I would spontaneously fall asleep, and the walking into walls. I really didn't want to pull the walker out again but it is better than breaking a bone! Uggg....I am trying to stay optimistic and look at the positives though so I will list them...
1. The IVIG made me feel better than I have in a year and I am getting it again on Friday
2. I was able to have a party for my son's Birthday, if asked a month ago I would have said no way, but I did it and the kids had fun.
3. Working from home is affording me the luxury of being able to work through my difficult times rather than have to call in, praise The Lord that the double vision doesn't come on until after hours.
4. My husband is much less stressed now that he has seen me have good days, I think we had lost hope.
5. The doctor said the further into treatment I get, the less bad days I should have.

Sooo, while I am entirely bummed that my illness didn't magically disappear, I am hopeful that things continue moving in the right direction. I actually managed a 6 hour work day from home today, which was great. Though last week I was getting up at 6:30am no problemo and today almost didn't have my computer on and phone forwarded by 8:30am. Another thing to be thankful for - My husband kicking me in the pants and helping me out of bed:)

Here's to a strong and healthy week!