Tuesday, November 30, 2010
The FOUR main players (people who know me the best) including our beloved Dawn, who is my nurse most of the time, were gone. GONE. That left four people who were physically capable of doing the treatment: one woman who has done my pheresis once or twice, one who did it once, couldn't get the needle in my EASY arm (had to take the thing out 3 times!), one who has never done it, and one part-timer who has run me once before. I got the part timer.
This woman is completely capable, and is a very nice, compassionate person. She just doesn't know ME, how my veins run, etc. Both of my anicube (sp?) veins (the vein where your elbow bends) run crookedly. I know, I know. NOTHING about me can be simple and straightforward.
So the needle wasn't right in my draw arm (where they take the blood out) from the beginning. I could tell...it just wasn't right. I can't tell you how I know that, or how to fix it, I can just tell if it's not right. So for the first 45 minutes, we played with the needle (the width of a fork tine) pushing it in and out every few minutes to see if we could get a better position. NOT happening.
Since my return arm (where the blood with the new plasma goes back into me) was primo, she switched it and made THAT my draw arm. (The draw arm needs the best position.) After another 30 minutes or so, the needle that was not right from the beginning completely faded out, and she had to stick me again, with an angio needle (slightly smaller in width, but longer and sharp as a scalpel). That lasted about 30 minutes, and I wasn't completely done with the treatment yet (one bottle to go) but I was like that's it. I'm DONE! So we stopped. I normally run in about 1 hour and 10 or 15 minutes. This had been over 2 hours. It was NOT fun.
Now I have a hard little ball in my left anicube vein (the draw arm) and I don't know if it's a scar tissue blob or a clot. Nice. And just think, I get to do his every three weeks! Whoo-Hoo!!
I love my life I love my life I love my life.
Sunday, November 28, 2010
Would appreciate prayers for safety tomorrow and that everything goes well with the treatment.
Saturday, November 27, 2010
The kids make out okay, but Doug's mom and dad spoil Jacob rotten, because he is their only grandchild. So between Doug and I and his folks, yikes. Too much stuff! We actually did scale it down this year though, and asked them to do the same. Trying to get away from all the commercialism of Christmas.
So here are a few snapshots of my holiday.
My niece Jessica, and her baby girl Haylee.
Wednesday, November 24, 2010
I saw a show on TV the other day called I Survived. (I love this show...it's story after story of people who beat the odds and survive the most dangerous, horrible, unimaginable circumstances.)
This particular episode had a story about a missionary in Haiti. He was from California. He lived in Haiti at least 6 months out of the year, running an organization that helped the needy (pretty much 90% of the population in Haiti). He worked with people in the slums, in the ghettos, and in the gangland.
One night he was driving through some gang territories to bring a small child to an airport to get him to the United States for eye surgery that would save his vision, possibly his life. Suddenly gunfire broke out all around him. He himself was shot, although the child was uninjured.
He was being kidnapped for ransom. The gang members asked for $300,000. The missionary had to laugh; he tried explaining he was a missionary, his organization had no money! Eventually he was released for $3000.00, and was able to bring the child to the US for surgery.
I saw how these people lived. I saw the cardboard shanties and the nasty water. Now, especially, after the horrible earthquake and cholera outbreak, these people definitely qualify as "the least of these."
But you don't have to go to Haiti to find the least of these. Look around you.
The woman whose husband just walked out on her and their children, leaving her a single mom working 3 jobs to keep her children fed and clothed.
The soldier's wife, raising a baby alone while her husband is overseas.
The homeless man you pass on the street every day on your way to work. Have you ever really seen him?
The elderly man with no family left. No one to visit him. No one to cheer him up in the old folk's home.
The chronically ill. Those who can't leave their homes without help. The shut-in. The ill. The imprisoned.
What you do (or don't do) to these, you do unto the LORD Himself.
Please be mindful of all we have to be thankful for, and reach out to someone who may need YOU to be Jesus with skin on.
Tuesday, November 23, 2010
So I called Lori to tell her Jacob has a runny nose, and she said don't worry about it, come on over. So we did. Now Doug and I are both sick. I hope everyone else stays okay.
I was JUST starting to feel a little better and able to do some things, and now I'm sick again. I think I need to pull jacob out of daycare. I don't want to, because it's his socialization, and MY break. But I don't see a choice. I'm sick of being sick. On TOP of all the other BS I have to deal with. Happy happy joy joy.
Monday, November 22, 2010
Of course you have to have the turkey! We had a lot of fun making this. It takes time, and a willing child, but we did it!
My favorite of all: Baby Jesus in the manger. You paint the wrist brown, and then about halfway up the palm whatever color you want the blanket, then peach for the face. Loved it!
Saturday, November 20, 2010
I've never made candy before. It's really not that hard, but there are a couple of things you MUST do. Like tap the trays after you pour the melted chocolate in them...get's the bubbles out. Didn't do that on my first ones, and you can tell.
This was my first batch. The red and green ones I didn't tap the bubbles out, so they're kind of melty looking. These are mint. I'm so impressed with myself! (well, kind of!)
Peanut butter-chocolate and Chocolate candy. I'm gettin' the hang of this!
Friday, November 19, 2010
Tuesday, November 16, 2010
One of the prompts for this week is, "Why are you burned out?" Since a million things bombarded my brain, I thought, well that's a perfect topic. And, since I've spent the entire morning so far putting out little "fires..." thought I'd share.
1. We are getting new insurance next month. While this doesn't effect me TOO much, since Medicare is my primary, all of my prescriptions will still be paid by the new insurance. We have a HUGE copay: $2400.00. The good news is that our medical savings account will be front-end loaded, if you will, so we will have the money there. The BAD news is, NOTHING is covered until the deductible is met. One plasmapheresis treatment is over $4000.00. Medicare will pay the first hunk, but then it goes to the dedeuctible of our new plan. One of my medications is like $1600.00 for a three months supply. So we use up all the $2400.00 right away, and we have nothing to pay medical bills with til more money grows in the account. It's not like flex that you can borrow against. Confused? Me too.
2. Since we ARE getting this new insurance, I'm trying to get every refill possible in November yet so that they are covered and we just have to pay the copay. That means keeping very careful track of Medco, because they have been known to NOT fill a prescription and not tell me for WEEKS. So I've been calling everyone and their brother about medicine and billing this morning.
3. I've also had to check on a claim filed with our CURRENT flex account for mileage. They have the stupid $2.00 parking stub covered, but don't have the $45+ for mileage. Ug. So I had to e-mail them.
4. I've been waiting for blood work results for Jacob (he's fine, just routine stuff plus a check for lead, and his iron levels). If they are normal, we can cancel our appointment for tomorrow. If they are not, we have to keep it.
5. I have a four year old boy. 'Nuff said.
6. I have 3 dogs. Mmm-Hmm.
7. I'm trying to write 2 blogs and a book.
8. I homeschool my child.
9. "We" are stepping up discipline BIG TIME in order to prepare our son for life. We already do pretty good, but I am learning SO much more from my dear friend Shawn. She's the parenting guru. Love you Shawn!
10. I live with chronic disease that never, ever takes a day off.
SO....THAT'S why I'm burned out!
BUT....life is still good. : )
Sunday, November 14, 2010
October 20, 2000 (Friday)
Thursday I was pretty frustrated and upset. I'm trying to write and they can't read my letters. Patty was my nurse today. She's nice and very helpful to mom and dad.
Dr. Selwa said she would increase sedation today so I wouldn't be so anxious today. I did a lot of sleeping today. Mom and Dad felt better because I was more at ease and peaceful.
I had my second treatment at noon today [plasmapheresis]. These will help me feel stronger. Mom told me Gordy and Dee were coming to see me tomorrow. I wrote, "In all my glory." The humor is still there. Another time I wrote, "I have no underwear on, humiliated." Also wrote, "I have no modesty."
[I totally remember this feeling. I was always a very modest person. VERY modest. To be there, knowing I was "exposed" to say the least, added to my anxiety and sadness.]
Saturday October 21, 2000
Mom came in about 7:45 AM and I was already upset. This tube is gagging me, then I need to be suctioned. "Yuk." I try communicating with mom by writing but it isn't very legible [In the notebooks I kept that I wrote in throughout this whole time, I saw how I had been trying to communicate. I was making little mountains....Like a capital A without the cross-stroke over and over and over. I remember being SO frustrated that no one understood. I was like, I'M the sick one here, people!!] and no one could figure out what it is.
Gordy and Dee came today. It was good to see them. Dee and I exchanged a few words...mine were mostly looks. As Dee says, "one look says it all!" One time I wrote "smart-ass" to Dee. We kid with each other, we love each other a lot. I also wrote, "When I'm better, Dee and me are going shopping." Mom added, "And out for the best lunch you ever had." Somehow, liquid food down the nose directly into the stomach doesn't do much for me.
In the afternoon, the tube in my nose came out, "I may have accidentally pulled it in my sleep." I told my mom I had a bad dream and all pink and blue stuff came out of my nose. My nurse that day was Jay. He was nice but I'm not too comfortable with a male nurse.
Jay had to put the food tube back down and that was TERRIBLE. When Dr. Smith came in about 5PM mom told him I had a terrible day. After explaining everything that happened he said they would "put me to sleep." How I loved hearing that phrase. Mom and Dad checked on me about 8PM and I was sleeping like a baby.
Saturday, November 13, 2010
Friday, November 12, 2010
Well, it's NEVER going to NOT bother me, because it's not the way I was made. I was fearfully and wonderfully made, and knitted together in my mother's womb (Psalm 139). Myasthenia gravis is a crippling condition, mentally, emotionally, physically and spiritually. Unless and until I fully comprehend that, I am going to struggle.
I am not just a physical being. I have a mind. I have a soul. I have a spirit. And everything is effected by this wretched disease.
I thought that grief was like a checklist: first you're in denial, then you're angry, then you bargain with God, then you're depressed, then you accept it. Well, it's more like a labyrinth than a ladder. It's not a straight-up-the-pegs-go-through-it-once-and-you're-done-kind of thing. It's more like a crazy, twisted maze that starts you off in one direction, then spins you in another, only to find yourself back at the beginning all over again.
My latest setback was the realization that barring direct act of God, I will not have any more children, neither biologically nor by adopting. Several things have lead up to that decision, which I'm not quite up to sharing yet. All I know is that the hole in my heart seems so big and so consuming, that I feel as if I'll never recover.
I always wanted a lot of kids. I NEVER wanted an only child (no offense to only children, it's just a personal thing). Doug is an only child and it is immense pressure. I never wanted that for my children.
It's not fair. But it is what it is. I can't change it. I don't know that I'll ever accept it either. But I know I have to grieve. I don't want to, because it hurts. A lot. But the alternative is worse. Keeping it inside only makes it grow, and consuming, and overwhelming, and before you know it, you're in a very deep, dark hole that there's no escaping.
So I will grieve. It will take time. A lot of time. But as Job said, "I KNOW that my Redeemer lives." Whether here or in eternity, there will be redemption.
Thursday, November 11, 2010
May God bless you and your families, keep you all safe and protected until you are reunited again. Thank you for your sacrifice.
Wednesday, November 10, 2010
Ever wonder what it would be like to NOT be involved in mankind? Anyone ever felt like they WANTED to be an island? I honestly never have in my life, until now. To just be by myself, no one to make me cry or hurt me or confuse me or break my heart. Just me and God.
My life is a pendulum. I am the pendulum....or more technically I should say I'm the "bob" at the end of the pendulum. (That's what the thingy on the end of a pendulum is called. Learn something new every day). It seems like anyone or anything has the control of the motion, and I'm just along for the ride.
I've always wanted to be part of something...some group. Sisters. Friends. Mothers. Bloggers. Christian women. Wives. Like live and in person, not just behind a screen. But lately I feel as if it would just be better if I could just isolate myself totally. Then I could only disappoint myself. I would be the only one to blame.
I think me and the Lord would do just fine. He won't rip out my heart and crap in its cavity.
Tuesday, November 9, 2010
Monday, November 8, 2010
After the last 2 months, no words could have been more perfect for me to read at this very moment in time:
"My dear brothers and sisters, we would do well to slow down a little, proceed at the optimum speed for our circumstances, focus on the significant, lift up our eyes, and truly see the things that matter most. Let us be mindful of the foundational precepts our Heavenly Father has given to His children that will establish the basis of a rich and fruitful mortal life with promises of eternal happiness. They will teach us to do “all these things . . . in wisdom and order; for it is not requisite that [we] should run faster than [we have] strength. [But] it is expedient that [we] should be diligent, [and] thereby . . . win the prize.”
Somehow, even though I've heard the same thing literally hundreds of times by dozens of people (slow down, don't rush, pace yourself, don't over do it), these words got me. They sunk in. It is almost as if I have finally granted myself permission to relax. Proceed at the "optimum speed for my circumstances." Mmm-mmm. Can I get an AMEN?!?!?! I don't know what it is about a certain phrase or set of words, but the way these were put together simply sang to my soul.
"It is not requisite [required, necessary, obligatory] that we should run faster than we have strength....but that we should be diligent and thereby win the prize." Finally. I think I'm going to have t-shirts printed up, wallpaper my house, shout it from the treetops (well, maybe not. I can't really shout, and I certainly won't climb a tree!) but you get my drift. This is my new mantra. My new dawn. My new day. My new life.
And I'm feelin' GOOD!
Sunday, November 7, 2010
October 18, 2000 [the day after I arrived by helicopter to University Hospital in Ann Arbor]
Mom and Dad came in early this morning. I am extremely unhappy with this tube down my throat. It is most annoying. I'm asking when this tube is coming out. They try explaining that I need it for breathing. This disorder [all they knew at this point was that it was neurological] I have has made my muscles weak and has done some nerve damage. They think it's called "myasthenia gravis." This can be treated with a treatment called "blood plasma exchange" [plasmapheresis]. Also cortisone is given and possibly other drugs as long-term treatment. [There is no cure].
All I know is I'm laying here with no underwear on, tubes everywhere and I can't communicate. I try by writing on paper with a marker. I haven't lost my sense of humor though. I wrote, "Do I look fabulous or what?" It made mom and dad laugh.
October 19, 2000
This morning Dr. Smith talked with mom and dad. Now he says they aren't sure if it's myasthenia gravis because although I have many of the symptoms there is a couple that usually begin like drooping eyelids that I don't have.
I need another EMG to find out. I didn't really care to hear that either. This is a nerve test and ends up with me being poked with needles [not to mention shocked!]. I still want this tube out "now!" My humor shines through once again when I write "Am I still alive?" [I'm not sure I was actually kidding at the time!]
Later today the doctors say they think I may have something called "Chronic Inflammatory Demyelinating Polyneuropathy" or CIDP [not to be confused with lung disease called COPD].
The treatment for this one is the same as the MG so they say they're beginning treatment. I'll have one today, one tomorrow, and 3 next week. Also had another spinal tap today. More poking. They're sending my spinal fluid to Boston and Maryland for testing.