It’s my last night in the city, and I’ve traveled from one end of the strip to the other more than once. I’ve also WALKED a good part of it as well.

I’m reminded once again how blessed I am.

I went to the Grand Canyon today!!!!

AMEN !!

Happy Anniversary to Mom & Dad !!

It’s colder out here than I thought it would be.

Seems strange, I’ve come all this way to finally ride a bus. That’s the BEST way to get around in this city.

Happy Birthday to the following:

Jesus

Evelyn (Motherdear)

V. Mary Payne

Merry Christmas to everyone else.

We’ve arrived in Vegas and luggage was lost. It was after 3.00 am (east coast time) by the time we went to bed.

Going to Las Vegas for the holidays!!

First Mad Cow, then Chickens, next greens (lettuce etc), after that came peanut butter.

Now it’s Pork. Well maybe.

I saw on the news that eleven (11) people who work at the same pork processing plant have contracted CIDP.

Of course the owners are scrambling trying to do damage control and shouting loudly for anyone to hear that CIDP is an Autoimmune disorder, but the odds for this are soo huge, that the CDC is involved to “help” find out what the common variables are.

I really feel for these people, but Maybe we will finally get some National recognition for CIDP and the help that we need along with it.

My trip to Florida for the Sales Leadership Module Training is next week.

I’m looking forwarde to it.

3 days in sunny Florida.

The traveling logistics are kind of crazy though.

I’m flying into Ft. Lauderdale and leaving from Orlando.

Oh well.

For the abundace of Blessings I’ve received, I am Thankful.

Child !

The Lupron is working well, but these “personal summers” are kicking my behind.

I’m back in the pool as much as I’m able.

Lab test are back and as I suspected, things aren’t that bad.

I’m still severly anemic and my counts are down to 8.6.

My A1c has gone up to 6.7. That’s still good, considering I’m off the pump and we are working on the correct med for me to take.

My latest labs are in from Cheryl. Ken and I are playing phone tag.

They can’t be that bad, if they were, Cheryl would have called and told me I needed to make an appointment.

Getting a lot done this morning.

First stop, Dr. Fishers’ office to get my expensive A## shot. For $5,106, it had better work with a quickness.

Second stop, IVIG today.

Did she say $5,106 for a single shot?!

No wonder I’ve been getting calls from the insurance companies.

Let me hurry up and start returning these phone calls.

I’m tired of this.

I feel good, so I know it’s not the CIDP. My blood sugars are erratic since I’ve been off the pump.

The Metformin and I aren’t getting along either.

We are NOT happy.

I really need to see Dr. Fisher ASAP.

I'm tired.

My cousins wedding and my CIDP support group was yesterday and I missed both of them.

I've learned to listen to my body (even if we still don't get along) and take heed.

I stayed home.

To my Baby Brother -

Happy Birthday !!

God Bless

I've seen both Nancy and Cheryl again.

Things are looking GREAT!!

I'm Finally OFF the Steriods!! Praise God!!

I'm still off the pump, and I'm able to tolerate the Metformin (sp?) pretty well. Not having too many issues with low blood sugar.

The next time I see Nancy, I'm hoping that she will move the IVIG out a few more weeks.

Okay the test are back on my left arm.

It's Carpal Tunnel.

The simplist thing was the last thing she check for.

Go figure

I'll take Carpal Tunnel over Lupus anyday.

Went to see Cheryl today - I'm OFF THE PUMP !!

I was feeling okay until this afternoon. Started to get sharp throbbing pains in my right leg. Mostly the knee & thigh area.

My arm hurts and whatever this is, it’s getting worse. If I make a fist with my left hand, pain shoots up my forearm.

It’s not weather related. Today’s forecast is for 101 degrees – this isn’t counting the heat index.

Labs are back – what’s up with Dr. Schecter’s office? They want to charge me $10.00 for my own lab report. I called Ken and he faxed them to me for free.

The good news is that I don’t have Lupus and the issue with my left arm is carpel tunnel.

Been off-line for awhile and trying to get back in the habit of posting. Things are sooo crazy at my job. My supervisor had a stroke and I’m basically working our department alone.

Back at home. Damn it’s hot!! My cycle decided to show up for a brief visit. Not enough time to get that biopsy schedule and done.

Oh well.

Went to Bush Gardens today with the cousins. There are sooo many hills in this place.

Most parks level things out (somewhat anyway), but here it’s supposed to add to that “old world charm”.

My legs are going to be sore tonight.

In Williamsburg, VA.

Nana’s service was today. It was very nice. We left right after the repast.

I went shopping with Kim yesterday. That’s right, me in a mall.

She has a good eye for clothes and picked out a very nice outfit for me to wear at the service and I’ll be able to wear it to work etc as well.

Feeling much improved this morning. The nights here are sooo cool. I’m taking in the 40’s and 50’s.

In Baltimore and I’m tired. I’ve clocked long hours this week trying to hit forty (40) to leave early enough to drive up here before traffic got completely stupid.
Once again, I was fine until I got to Northern Virginia.

Crossing into Maryland wasn’t any better either. Sometimes I think these people are slowing down to read the traffic information signs.

Went to see Nancy about the way my left arm is hurting. She thinks it may be a side effect of the Zocor I’m taking. Please – Cheryl told me to stop taking that weeks ago because my counts where so high. Nancy thinks not enough time has passed for it to completely clear my system.
I disagree.

Mable Payne-Young

-God Bless

IVIG today. The only drama today is that Kaye needed to use my right hand for the infusion because my arm still hurts.

I’m Baltimore for the Crab Fest (Feast) today and it’s a bit warm up here. We had a good time. I haven’t had crabs like this in a while. Plus, some of the church members put on a comic, dance lessons and the best part was the Tina Turner Review.

My left arm hurts as if I’ve being doing curls.

Happy Father’s Day to all the Real Fathers, Real Men out there.

Riddle Me This

Sex: Female
Age: 45
Height: 5 feet, 5 inches
Weight: 268 lbs
Medications: Skelaxin

Symptoms: Leg / muscle pain and weakness for approx 8 weeks.
Pain is centered around the muscles of the thighs. Left leg is worse than the right.

Left leg will occasionally buckle when she tries to stand. Increased pain upon standing, and is immobile before able to move either leg. When moving, gait is unbalanced. During the past two weeks, pain has radiated to lower leg of left side only.

Symptoms: Arm / muscle pain and weakness for approx 2 weeks. Pain is centered above and below joint on left arm only.

Recent MRI results:
Vertebral body heights and signal characteristics are normal. Disc desiccation with minimal endplate overgrowth and moderate facet degenerative changes results in bilateral foraminal stenosis, mild on the right and moderate on the left.

L4-L5 Mild endplate overgrowth with mild disc desiccation and moderate facet degenerative changes results in mild bilateral neural foraminal stenosis. L5-S1 Normal Impression Degenerative disc disease and facet degenerative changes resulting in foraminal stenosis as described above.

Cheryl’s office called with my test results today.

My CK totals have come down. They are still high, but down is good.

The MRI doesn’t show anything, which in itself is good news; and at the same time, it’s bad news. Nothing on the MRI means that I’m back to “the process”. As in process of elimination. I so don’t want to hear, “I don’t know what it is, but it’s not this”.

Medical science has come a long way and there are times when medical science is great. My greatest irony is this, even with all of these advances, medical science can still suck.

Had the MRI done today. It was just a little larger than the MRI at Rex, but with some creative positioning, it worked.

It was supposed to be a quick in and out appointment. I should have known better. I was there for over two hours. Cheryl found another MRI center (that takes UHC) here in Raleigh and they asked if I could be there at 12.30 on Saturday. I wasn’t about to say no.

That’s it!

I’ve had enough and I’m not taking it anymore!!

I called Cheryl and I have an appointment tomorrow. So much for my weekend.

Today is my birthday!!

Once again, I have much to celebrate.

God Bless me and all of my family and friends.

Teresa from Wake called. It appears that even though I have an exception from UHC to be seen at Wake. UHC won’t verify that they will PAY for the MRI as In-Network. Excuse me?? That was the whole point of getting the exception.

Without UHC verifying payment, I could get stuck with the bill as an Out-of-Network expense. The MRI is over $2,000.

The math would be something like this: $2000 for the MRI (plus the office visit), minus the $500 deductible, then UHC would take 65% of the cost of the MRI and I would be left with the remainder.

I’m glad she called. There is no way I’m paying for this.

I called Dr. Schecter’s office to let them know this test wouldn’t be done either.

I was SUPPOSED to have my MRI tonight.

I say supposed to – I wasn’t able to fit into the machine. Well that’s not accurate. I could fit into the machine, but with my arms crossed in front of me. Even this way, my arms still touched the sides. There was no way I could stay still for 25 minutes (in that closed space) with out moving.

I didn’t understand what the problem was, I’ve had an MRI before and it was never this tight. The nurse asked me where I’d had one before, and I told her “across the street from Rex”. She then informed me that the machine there was a Semians and the one at the hospital is a Phillips. Apparently, MRI machines are like shoes, different manufactures have slight differences in sizes. One size does not fit all.

The machines made by Semians are larger.

Let’s hope so.

I’m in love and I’m in heaven. I’m at Aunties house tonight and I’m in her Jacuzzi.

I’ll sleep real good tonight.

Denise from Dr. Schecter’s office contacted me. I need to have an MRI done.

Well at least I don’t have to take time off from work. Rex will do them after “regular” hours. Tuesday, May 29th is when I’ll have mine done.

I feel like a pin cushion. I had my appointment with Dr. Schector today.
As I started explaining to her how weak my left side is, she went straight to Stroke.

Once we cleared that up. Started the basic test, then she did another nerve conduction and this time she used the NEEDLES. OUCH!!!

After I’d finished seeing her, I went and checked in with Cheryl. I don’t know what happened with them today. I waited in the lobby for half an hour, and then waited in the back even longer before Cheryl came in. Once I got her caught up, I asked about coming off this pump AGAIN. Doesn’t seem like it’s going to happen this year.

Damn.

Just before I was leaving, she sent me for labs. Good thing I gave up that specimen when I went to the bathroom while waiting for her to get to me.


The good news is . . . .I’ve lost another three (3) pounds!!

I’ve taken my muscle relaxant this morning. I won’t get much done today.

Some good news – the results of my Pap are in. Everything is normal. About time something came back as “normal”.

But what is this? Need to have a follow –up visit? Now what??

You know how you feel when you see the relatives (or friends) that show up unexpectedly and don’t know when to leave pulling up in your driveway? Dealing with parts of this disease can leave you with “those kinds” of feelings.

The Edema is back.

Shows up right before I have two doctor’s appointments.

My LFS Foster Care meeting was today. Because tomorrow’s Mother’s Day, LFS paid for our breakfast. After the meeting, the foster mothers received cards and small gifts.

It stopped raining long enough for the park to finally have their pool party today. I personally think it’s still too cold to get into an outdoor pool, but kids don’t seem to mind.

Even though I have the Handicap Parking decal, I don’t use it that often when I’m out and about. I’ve been walking rather well, so I park the car wherever and get that “extra” bit of exercise in at the same time.

I used it this morning. I used my cane as well.

Last night was a bit rough.

Even though I’d taken a hot bath and a Skelaxin before I went to bed, my legs started throbbing during the night, and are very tight this morning.

On the 1 – 10 scale, I’m at a solid 7 and I can’t take anything to really put a dent in the pain because I’m working today.

I’ve moved up my next appointment with Dr. Schecter. I’ll see her on the 21st.

I’ve checked my log and I’m taking Skelaxin more often than I realized or want to. This has become more than just “managing pain on occasions”, it’s becoming a habit and I’m still in pain.

Time to find out why.

We had a fire drill at work today. Actually, the building was testing the fire alarms again, and Craig Davis didn’t’ tell send the email out in time to notify the building.

Because they had been testing the alarms earlier this week, it took us a while before we evacuated the building.

It was a slow walk down five flights of stairs.

The Raleigh, NC CIDP / GBS Walk-A-Thon was today.

Even though only a few of us turned out because of the weather, the walk turned out well enough, and we had a picnic afterwards. There were about 30 people at the park, and we raised over $2,200. Not bad so a small chapter.

Hopefully, more money will be sent by the end of the month.

Then Mister and I went to the dog park afterwards.

It’s been a long week.

My legs have hurt the entire time. I’m back on the Skelatin at night, but no relief.

Back home from picking up my dog and I will be going to bed early tonight.

My feet hurt and my legs are warm.

I so dread getting up tomorrow morning.

Today is the last day of our conference and I’m tired.

We are all tired. There are fewer people at breakfast this morning. Actually, I should say, there are fewer people on time for breakfast this morning. Most people are coming in just as the wait staff is trying to clear; they are grabbing that bagel, muffin and coffee and taking it to class with them.

Earlier today, one of my classmates asked me if I was okay, because she noticed that I was limping. I said that I stayed up too late last night.

Last night’s ball was fun and funny. The crowd was very diverse in ages, and mixed in races. A couple of times, the DJ had some of us learning how to do the “Swing” and “Salsa”. The only times we were all on the floor was for the “Electric and the Cha-Cha Slides”.

Our event coincided with “The 100 Black Men Of America” event, and the 100 Black Men had to pass our venue to get to theirs. Those of us, who were dressed appropriately, were out in the hallway having conversations and trying to switch venues.

A good time was had by all.

It’s about 5.15 pm and we just left the last class of the day. We started at 8.00 am. These are working hours.

We are on our own for dinner.

I’m glad I went ahead and reserved this hotel room. I’m going to lie down for a while and maybe take a nap.

The Masquerade Ball is supposed to start at 7.30pm. I’m going, but I will be late.

The first event on the conference agenda is at 7.00 am.

I need to be there at 8.00 am.

I found out last night that I’m supposed to be a Monitor in one of the sessions and need to report to the registration desk this morning for a quick briefing.

My Foster Care Conference starts tonight and I’m looking forward to it.

I went to the “Networking & Social” event tonight, and was surprised by the number of people already there.

I’m not sure if this was intentional, but the “Singles” and “Kinship” families were on one side of the hotel and the “Couples” were on the other side of the hotel.

They should have known better. Everybody ended up in everyone else’s room anyway.

Okay, I’ve got a two week reprieve. Cheryl is out of the office for a while and I’ve called Jo Ann to get a copy of my lab report.

Here we go:
CBC’s = Complete Blood Count
My CBC’s consisted of eight (8) different tests. Five (5) of them are abnormal.
Hemoglobin 9.1 The Range is 12.0-15.0
Hematocrit 31 The Range is 36-46
MCV 75.4 The Range is 78-100
MCHC 29.4 The Range is 30-36
RDW 17.9 The Range is 11.5-14

My Iron is as follows:
Iron 25 The Range is 42-145
% SAT 7 The Range is 20-55

Translation – my anemia is worse.

Reason – don’t know why.

And do you know that they have moved the ranges for the LDL Cholesterol? The new ranges are 0-99. It was 0-130. My LDL is 124.

The GOOD news is – my A1c is 6.1

YES!!

My doctor called. And we need to have a “chat”.

I was listening to the news.

Elizabeth and John Edwards are going to have a press conference.

The reason for this conference follows a routine doctor’s appointment that Elizabeth had earlier.

Once the press stated that she needed to revisit her doctor regarding the results. I just said, “God Bless”.

Those of us who have been here; KNOW that whenever your doctor calls you and tells you that you need to come in for a “chat”, it’s never good news.

Same story, different chapter.

My legs hurt from my knees to the hip.

I am Hoping that the pain is a result of me removing the booster seat from my toilet, and the fact that the lower seat is causing me to have to use muscles that haven’t been used in a while.

Hope translates into prayer

Went to PT @ Rex today.

It was an interesting experience. I needed to be there at 7.15am. It’s too early for this.

Wake Med and UHC aren’t speaking anymore.

The PT actually did some research into CIDP (she kept say CIPD) before I got there and she’s treated some people with GBS before as well.


All of my ligaments are where they are supposed to be. However, she said that my left side was weaker than my right. (DUH) and that I’m “tighter” on my left side than my right.

While she was probing my head, she hit something and my headache wasn’t as intense when I left.

One of the simple exercises she gave me to do was to nod my head forward so that my chin points down to my chest. It’s supposed to help the muscles and increase blood flow.

I look like one of those bobble head dolls.

I’ve had it. I need to find Lisa or another GYN.

I liked it when my cycle just took a hiatus. I didn’t miss it at all.

Now its back with a vengeance. I don’t need this drama. I’ve gone through two boxes of Supers.

I’m already anemic. This will really put me over the top.

Happy Birthday Atonga.

Mister and I went to the Dog Park this morning. We didn’t get there early because those days are over for me when the weather is below a certain degree and it’s still wet and cold from all the rain from yesterday.

As we were leaving, in came a woman with three Irish Wolfhounds. (think shaggy Great Danes) Whoa. She and all three of the dogs had on something green.

And Happy Saint Patrick’s Day to the rest of you.

IVIG treatment today.

Can we say DRAMA?!?

First my IVIG has black flecks of something floating around in it. So they tried to filter it. I don’t think so. So they mixed a whole new batch. It was going on 11 am before I got hooked up.

Around lunchtime, more drama.

One of the ladies was getting iron and after that, she got a shot. Next thing we know she was passing out. While the nurses were trying to get her stable, another lady, who was getting blood, started shaking from cold and getting sick.

Next thing we knew, chairs where being moved around and nurses were everywhere. The regular day treatment nurses left the room to escort the two ladies upstairs and file reports and nurses from the other cancer center stayed with us. At least they fed us.

Both patients ended up being admitted for observation.

And it was after 4pm before I was allowed to leave.

Long day.

Went to see Dr. Schecter today.

We discussed my memory loss issues, and headaches. Good news is that my reflexes are making a comeback since my last visit.

My prednisone is at 5mg per day.

She is also sending me to PT for my headaches. She gave me a script for Skelatin, which is a muscle relaxant and told me to buy a mouth guard to use at bedtime. She thinks I grind my teeth at night.

I was looking forward to working with Matt again, but I forgot that since UHC has dropped its contract with Wake Med, I'll be doing PT at Rex.

We went on a field trip today.

Two hour ride there, lunch, conference while there then a tour of the plant and a two hour drive back home.

My legs are hot.

The CIDP meeting is tomorrow and I really want to go.

Saturday’s weather is supposed to be warm, but Sunday’s is not.

It’s going to be a long weekend.

Short and sweet.

There are 28 days in the month of February.

I’ve recorded headaches for 15 of them.

I’ll see Doctor Schecter on Monday.

Winter has decided to make an appearance and stay for a while because the weather has stay consistent these last few days.

Night time is the right time for my electric blanket. Yea and thanks again to my Aunt Mary for the gift card.

The toes are weather fairly well.

My main concern is the rash I have on my ankles. The left ankle is worse than the right.

My mouth is doing a lot better. My left gum is healing very nicely. I need to call the dentist to see when I can get another tooth put in.

Went to the dentist today.

I've finally found a female AND African American dentist. Too bad the DentalWorks office is in Cary. Oh well.

Anyway - I'm going to see an Oral Surgeon tomorrow to have my tooth removed. After two consultations that's the best they could come up with. This office didn't want to take a chance at removing it. It's fractured in more than one place.

I asked the DDS, how did I fracture my tooth and not feel it. She said it happens all the time because after a root canal, there aren't any nerves left.

So, what hurts then? The surrounding nerves.

After all the money I spent having a Root Canal done to Keep my tooth, I'm going to lose it anyway.

And yes, I stumped the DDS's today. Medical Eval form - I put CIDP (ask me).

Holy Sandman Batman!

I actually slept thru the night w/o getting up once to go to the bathroom.

Haven't done that in a while.

To paraphrase from Salt & Peppa:

Here we go, here we go, here we go again.

What’s my weakness?

The weather!!

It’s been rather warm lately; in fact it’s actually reached the 70 mark on a few occasions. Today is no exception. The high today was 75 – in January. The lows haven’t been that bad either.
Oh well – all good things must come to an end. The mornings are going to be below freezing and there’s a cold front coming through. It’s supposed to rain for the remainder of this week and part of next as well.

My legs all ready hurt.

Now what??

So much for no news being good news.

Cheryl's office called me today and she wants to talk to me regarding my last test results.

Well, I’ve posted my deductible already.

I had my appointment with Nancy today and some things took a turn for the worse. My reflexes are diminishing. And once I mentioned my numb toes to her she did another nerve conduction test.

Well the bright side of all of this is that I don’t have diabetic neuropathy.

Happy New Year!!

I want to thank GOD for seeing me through last year and pray that he continues to carry me onward.