My legs hurt this morning. I knew it was just a matter of time. I’ve been going up and down these steps since I got here.

My brother is taking my mother and I on a road trip. We are going to Mexico for part of the day.

Take a pill and have cane, will travel.

It Christmas morning. The house is so quiet. My internal clock is still on east coast time.

My stomach is still upset and I have a headache that won’t go away.

Despite all this, today was a good day.

We are truly blessed.

You know with Mister being in the kennel and the fact that I was so tired when I arrived last night, one would think I’d still be in bed sleeping late, getting used to the time difference. Not. I’m up around 7.30 am (EST), which is 5.30 am here. Maybe I’ll go back to bed.

My brother’s house has steps and of course the bedrooms are on the second floor. I’m doing pretty good going up and down the steps.

My stomach is very upset. I’m spending more and more time in the bathroom today.

Today is my first time flying since I’ve been ill.

I’ve lighten my load by shipping my clothes out beforehand and the only thing I’m going to carry is my laptop and lunch bag. I’ll have my cane with me just in case.


I’m glad I had the foresight to bring the cane. I really needed it a few times today.

I don’t like the DC (Dulles) airport. They need to be more like the Atlanta airport and put in some subways (at least one) and the moveable sidewalks.

Finally in Tucson – I’m tired. With the two hour time difference and the drive to the house, it’s midnight by the time we get here.

Ten more days until Christmas.

Six more days until my next treatment.

Other than the fact that my feet hurt and my toes are numb, I'm hanging in there.

Stuffed UP!!

It was down right brutal last night!! Back in the 20’s. Crazy dog – he just wanted to play. So sorry, momma was not having it.

After I take Mister Cross to get his shots updated. I’m coming home and going to bed and kick the “you know what” out of this cold.

I just might get arrested for trying to buy too much Sudafed and other cold remedies you have to sign for these days.

Damn Crackheads make life difficult for us honest cold suffering folks.

Man O Man.

I’m coming down with a cold.

This crazy A** weather. It’s hard to predict what to wear. I tend to dress for the current month, rather than the temperature of the day. Remember what mamma used to tell you – “I don’t care what the temperature is, it’s still (fill in whatever fall/winter month here), now go change your clothes.”

However, once in the office, it’s usually too hot or cold depending on what side of the building you are on and whether or not the heat is working.

Got my last test results back and once again, I’m “spilling protein” from somewhere.

It’s not too bad. Or perhaps I should say, I don’t need to see Dr. Garrett again anytime soon.

Karen called me this morning. The doctor is back in the office and has read the results from my M2A Capsule Endoscopy. Basically, whatever the reason for my acute anemia it’s not coming from the G.I. Tract – it’s clear.

However, (there’s always a “however” or “but” isn’t there) they me to redo the blood test at the end of the month (it’s going to be in Jan ’07) and redo the M2A Capsule Endoscopy in about three months.

I don’t think so.

I honestly don’t believe the reason I’m anemic has anything to do with my G.I. Tract.

"Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving."

- W.T. Purkiser

I’ve always said, and will continue to say, “I’m a Blessed Child Of God”.

Happy Birthday Dad!!



I'd like to give a shout out to all the Veterans out there. You are my family and friends.

God Bless
With Much Love,
Your Daughter

Cheryl called and I got my lab test results.

My A1C is 6.6% so it’s steady.

I’m not AS anemic as I was a few weeks ago. My Iron and TIBC (way blood moves iron) is a 25. The range is from 42 – 145. It’s Low, but I’m moving in the right direction.

Still having issues, my Ferritin (way the body stores iron) is at 13 and the range starts at 10 – 291.

My total Cholesterol has gone up to 230. I do need to bring this back down below 200.

Triglycerides are 136 (okay)
HDL 55 (good)
LDL 148 (not so good)

My CK totals (to determine Heart Attacks and/or muscle damage) are way off the chart on this one. It’s a 262 and should be between 7 and 177.

All of my Basic Metabolic Panel numbers are in range. Yea!

The fact that my Microalbumin and Creatinine, Urine number are a little high, Cheryl wants me to do another 24 hour urine test; and when I drop the “jug” off on Monday, the lab has instructions to draw more blood.

She always seems to want more, more, more.

Karen called me today.

Seems I won’t get the test results back anytime soon.

The camera took over 52,000 pictures and it’s going to take at least six weeks before I get the results back.

Up Early this morning because I need to check in at Rex before 6.15am for this Camera Endoscopy.

Electrodes are everywhere. Good thing I’d remembered not to lotion up this morning when I got out of the shower.

The electrodes snap into this data recorder (about the size of a CD Player) and the recorder fits into a belt with suspenders. More like a back brace that fits around your waist.

The nurse told me not to go into any 1) Financial Institutions, 2) Federal Buildings or 3) Airports. She said this in a joking manner, but I think she was “kinda serious” because she said it twice. I look like a suicide bomber with these wires and flashing lights.

One of my co-workers told me if I’d had this done yesterday, I could have passed this off as my Halloween costume.

Camera Endoscopy is tomorrow.

At least this time I get to eat until noon and then no liquids after 8pm. I bought the OTC stuff already. Compared to the prep for the Colonoscopy, this small bottle will be easy to get down.

I just hope it’s not nasty. It states “pleasing lemony flavor” on the label, but who’s kidding who. The manufacturer isn’t about to put “taste nasty” on a label.

Saw Cheryl this morning and we played “catch up”, since I haven’t seen her in months.

I did ask how much longer I needed to be on this pump and once again, I received no definite answer regarding an end date. Oh well.

I did mention that Edema was back. It appears to be one of those “off and on again” type of things. I asked her for a script so I can wear my sneaks when things flare up. I don’t want to have any “issues” at work when I have to wear them on certain days.

We redid my scripts for the next few months and I’ll see her again based on my lab test results.

Speaking of which, my arm is sore. There are twelve pre-printed lab test on the form; I’ve been marked for seven of them; and on top of that, she wrote down two more.

This is Misters kind of weather. He truly enjoys the brisk (cold) weather we’ve been having lately.

It’s getting harder and harder to get him back in the house when we go out. It’s not so bad in the afternoon and at night, but first thing in the morning, I’m sooo not in the mood for his playfulness. I need to get him back in the house and get ready for work.

He’s a beautiful sight to see. Head up and tail flying as he runs across the field. He’s in his element and looks happy.

This is his type of weather.


Alas, it’s no longer mine.

I drove to Baltimore this weekend. Left the house about 3.25am (that’s right!!) and arrived in Baltimore at 8.03am – this is my BEST time ever!!

We did ok, had the heat directed on my legs and the window open. Mister was in his crate and slept most of the way.

My cousins and I went back to Six Flags over the weekend for the FrightFest. This time the kids weren’t quite as bad about riding some of the rides. In fact, one of them actually conquered his fear of heights. You go boy!! But for the most part, they’re still chickensJ. One didn’t’ even want to go into the Haunted House – in the middle of the day!

We didn’t stay too long after dark. It was getting colder and my cousin was ready to go. I wasn’t. Nighttime is the Best time for the park, especially for an event like FrightFest. After dark is when all the ghosts and ghouls come out. We did see a few before we left, but it wasn’t the same as being in the park with the all the special effects in full blast.

To be honest, the colder it got, the worse my feet and legs hurt; by the time we actually left, they were both hot and burning.

I did spend some quality time in Aunties Jacuzzi after we arrived back at the house. I miss my bathtub.

Whenever I get my front bathroom floor fixed, I’m going to look into how much it would cost to have a deep tub put in. A Jacuzzi would be nice, but I’m not ready for the additions to my electric and water bill.

Got a call from Jackie @ Rex. She works in the clinic where they are going to do the M2A Capsule Endoscopy (I take the pill which is actually a camera to take pictures of my Small Bowel Track), with instructions for the prior day and day of the test.

I have to BE at Rex at 6.30 in the morning. Nov 1st going to be a long day.

At least with this test I can eat until Noon the previous day. After lunch, nothing by clear liquids for the remainder of the day, and nothing at ALL after 8pm.

I’ll still have to do a “bowel prep” the night before, but it’s not that “only by script” large jug of stuff this time. What I have to use this time is called Magnesium Citrate and it’s an OTC med. I just have to make sure I buy the “green” kind and not the “red” kind.

As we were going over the rules & regs for this procedure, I was instructed to say away from Ham Radios etc and I was asked if I wore a pacemaker. I said no, but I wear an insulin pump with a WiFi™ meter; I asked if this would interfere with the camera & computer operating correctly and once again, I’ve stumped the tech’s.

How can these people NOT know the answer to this question??

I can’t be the first person to wear an insulin pump OR have a WiFi™ meter taking this test.

Jackie also told me that I can’t have a MRI until 30 days after this test. I told her that hopefully, this will be the LAST “non-invasive” (yeah right-by who’s definition?) test I need to do in a very long time.

The swelling in my ankles refuses to go away. Once again, the swelling in my right leg is worse than my left.

The numbness has contained itself in my toes, the right being worse than the left.

I’ve also noticed that I’m back in the habit of getting to bed earlier. Not to sleep, but rather to just be able to lie down comfortably and stretch my legs out.

I haven’t started on the other Med’s yet. I don’t know what I’m waiting for. Part of me knows it will help with the pain, but at the same time, I don’t want to take them. It’s like I’m waiting to see just how bad it’s going to get before I do anything about it.

It is so pretty up here.

I didn’t realize how tired I was yesterday. I sleep through the night and slept late today. Well late for me anyway. I was up around 8.30am.

It’s a beautiful day.

As we were out and about town today, Austin bought another comforter to put on the bed for me. Hopefully I’ll sleep better tonight than I did last night.

The drive up here was uneventful. It’s colder up here than I expected.

I’m chilled to the bone and I can’t seem to get warm.

The numbness in my toes is still here, and it’s spreading. The Edema is back as well.

My last IVIG was three weeks ago and I have another three weeks to go before the next one on the 7th of November. If I had been thinking clearly, I would have asked Karen to schedule the “camera test” on the same day instead of the 1st since I’m already going to be at Rex that day anyway.

Too late to change the date now. They probably would’ve told me “no” anyway. That was my answer the last time I tried to double book on an IVIG date.

My next appointment with Nancy is in January of 2007, and quite frankly, I’m not trying to see her before then.

Now I’m starting to worry.

My legs have been bothering me for days, but I’m not worried about that part. Just yet.

Walking Mister last night, I could actually feel my legs tightening up.

I kept walking anyway; I need the exercise and so does he.

After a while, I noticed something unusual; not only did my leg hurt, but my toes were numb as well. Say What??? Where did this come from??

I’m telling myself not to panic and give into paranoia; it could be a number of things.

****************

Took a long hot shower (I miss my bathtub) to ease the pain in my legs and my nerves.

Also took two Motrin before I went to bed. Slept most of the night and didn’t get up for a bathroom break until about 4.30am. I also didn’t hear the thunderstorm we had, which is very unusual for me.

So much for “making it through the weekend” and “no news is good news”.

Yes – Karen called me this morning with my Small Bowel Follow Thru test results.

In a word – Inconclusive.

Seems I have a Prominence [(n) bump, lump swelling or protrusion] in my lower Bowel and the techs and the doctors won’t / can’t commit to there being nothing wrong with me.

Capsule Endoscopy take pill with large glass of water. Pill is actually a camera. Ain’t technology grand? Nano, nano.

The camera will take a picture of my small bowels every so many minutes. After the end of the day, I’ll express the camera and that’s the end of it. I’ll return to Rex later that day or the next and the tech’s and the doctors will read the recorded images and hopefully WE will have a complete and correct diagnosis of what is or isn’t going on.

I need to find out what Crohns disease is all about. That’s something that came up in my conversation with Karen. She doesn’t think that I have this disease since I have no systems of anything, but this test will definitely rule it out.

Shades of last year – “we don’t know what it is, but we do know what it isn’t”.

Sounds like we are working backwards again.

Once again I’ve stumped the doctors and the tech’s. I asked Karen about my pump and meter which works with radio waves interfering with the camera and giving incorrect results. Silence. She then tells me that my question is a good one, but she doesn’t know the answer to my question and she’ll have to call me back.

Once again, I’m the guinea pig

I don’t know what’s going on.

Dealing with these leg pains is getting on my last nerve. They’re almost as bad as last years. It hurts when I sit and hurts when I stand up.

I may have to get this scrip renewed.

Friggin antibiotics.

Just when I think that I’m in the clear and everything is fine, I catch a yeast infection. At least, THIS can be cleared up with OTC meds.

It’s a cool morning and my legs don’t feel any better. I was hoping not to have these “weather related” issues with my CIDP this year.

Being at the church today was okay. Not much going on there because it rained most of the morning and off and on for the remainder of the day.

Mother could tell that my legs were bothering me but didn’t comment on it too much other than to ask me where my cane was.

I’m going to soak in the tub later tonight. I’m looking forward to a long hot bath.

My legs hurt. Why now? Our CIDP group meeting is tomorrow morning and I’m supposed to go. I want to go, but if I don’t feel any better, I may not make it.

After the meeting I’m going to visit and help Mother at her church. Mister and I will probably send the night.

Today is Thursday and I’ve yet to hear from Karen regarding my x-rays. If I can get to Friday without hearing from anyone, that’s good news. The doctors don’t call you unless they need to see you again for some reason.

I’m still flushing this Barium out of my system. They could have told me that this stuff would “change the color of things” as it goes through a persons system.

On the Good News side of things, Sunday should be the last day I need to take PrevPac©. Hopefully my taste buds will return to normal and I’ll no longer have to deal with this nasty aftertaste.

Back to Nastiness

I had my Small Bowel Follow Thru today.

Basically, it’s a procedure which x-rays a person’s lower intestine. They accomplish this x-ray by having the patient drink Barium first, and then take x-rays every ten to fifteen (10-15) minutes to “see how things are moving”.

I don’t care what flavor it is or how cold they keep it, Barium is STILL nasty. Once you get it down, you are fighting to KEEP it down. One of the things the technician tells you is this; if you throw it up, you have to start all over again.

The highlight of my morning was when the tech asked if there was any chance that I might be pregnant, I immediate response was “Oh Hell No”. She burst out laughing and said that they like to hear such “definite responses” to that question.

To quote “Florida”

Damn, Damn, Damn!

My legs are hurting again. So much so, that my co-workers have made comments about it.

I just saw Nancy on Tuesday and everything was so good!

Why now?

When this happens to me these days, I do a quick “mental check” about all the things I’ve done over the past twenty-four (24) hours to see if there is ANYTHING to give me a reason to feel the way I do.

Nothing.

What I’m grasping for now, is “just maybe” my anemia is worse and the lack of iron is causing the muscle aches.

That’s my story and I’m sticking to it.

I’ve also changed my diet to basically seafood and green salads.

Muscles, Clams, Oysters and Shrimp are all high in Iron and I can and do eat them all. And more importantly, I don’t have to FRY them when I cook them.

I’ve also starting taking an iron supplement as well.

I’ve got thirty days (30) to get my iron count back up.

I’m so excited!!

Went to see Dr. Schecter today and nothing but good news!

Reflexes are going to do better each time and I’m going through the test very well. Still having issues with the weight, but at least I’ve finally stopped Gaining and finally starting to Stabilize. It’s About time. I’ve been working on losing weight and it finally starting to pay off.

We are moving my IVIG treatments out to every Six Weeks and I don’t need to see her every month. My next appointment with her is three months from now!

Can the Choir say “AMEN”!

Today is IVIG day.

I’ve also starting take the PrevPac script. One of these antibiotics is leaving a Serious nasty taste in my mouth which doesn’t go welll with the other side effects of nausea.

This script is 5 pills at one time, twice a day. Add my regular meds to this and I’m back to taking 11 pills a day.

Reminds me of what I went through last year.

It’s going to be a long two weeks.

The test results are in and it’s official: I have an ulcer, or rather Helicobacter Pylori (nasty bacteria which causes ulcers).

Fortunately, it has been caught in the very early stages and will be treated with PrevPac© for the next fourteen days (14 days).

Does this every expensive script come in a generic? - Of course not.

Then I also have to have an x-ray of my Small Bowel. This in itself wouldn’t be so bad, expect I have to drink a solution of Barium first.

Ugh – I’d rather drink Geritol.

After all of this has been done and all the tests are read and evaluated, I have a follow-up appointment at the end of the month with Karen at the Endo Clinic.

Pass the Word!

Happy moments, PRAISE GOD.

Difficult moments, SEEK GOD.

Quiet moments, WORSHIP GOD.

Painful moments, TRUST GOD.

Every moment, THANK GOD.

Amen!!

Another step in the right direction.

Signed up for a “Deep Water Exercise” class at the public pool! I was taking this class before CIDP and now I’m strong enough to begin again.

Also, I may be able to get an exchange on my pool ticket from last year. As I was speaking to the woman at the desk regarding the exercises and whether or not I was strong enough to take the class, I happened to mention that due to my illness, I wasn’t able to use all of my tickets from last year. She then gave me the name and address to the pool manager and encouraged me to contact her with my story and perhaps I’ll be able to redeem those unused tickets. It’s worth a try.

I get to Eat today!!

Today was “procedure” day. Up early this morning for my Endoscopy and Colonoscopy. According to Karen Saville and Cheryl Proctor, the reason for needing the exams at this time is because I have “Iron deficiency anemia” which has gotten worse.

Once again, I realize I have no tolerance for anesthesia. I saw the doctor inject something into the I.V., I remember tasting something funny and the ceiling moving. After that….

Strange dreams… Felt something in my throat, a cool breeze on my backside.

Next thing I knew someone was calling my name and asking me if I wanted something to drink.

We timed it just right. Once I was checked out and everything was declared okay by the nurse, Mother arrives in the bay followed by Dad.

Mother actually had to sign me out before I could leave.

They did however give me a “mini” report (with pictures) to take home. For the life of me, I don’t know why my internal pictures are better than my external ones.

Endoscopy: Hiatal hernia with mildly irregular z-line with islands within 1cm-s/p four quadrant biopsies. Mild nodular erosive antritis-biopsied. For all this, they gave me a prescription for Nexium.

Colonoscopy: Internal hemorrhoids and polyp removed.

The complete results are not in yet. I have to wait at least seven (7) days for I get the results of the biopsy back and then a possible follow-up with Karen.

It’s a conspiracy: just when I need to increase my iron levels, there is a recall on spinach! Geritol is just too nasty for me.

I could buy the frozen kind, but I like the raw in my salads and slightly wilted with butter and just a hint of garlic. Yum

All though North Carolina isn’t one of the states listed (yet) and I don’t buy the organic spinach (too expensive), I’m not going to take the chance.

Geritol = Nasty

It’s the quickest way to get my iron count back up. Something needs to turn around, because I’m NOT even trying to go down the blood transfusing route.

What I don’t understand is this; Geritol has been around FOREVER (since the 1800’s), and one would think that after all this decades (centuries), the makers would find a way to make this stuff taste better.

Ugh

Going back to "Vamp style"

Got my test results back from Monday's bloodwork.

I'm going in the Opposite direction! My Iron count has gotten worse.

It went from 10.5 to 9.9 Normal is from 12.0 - 15.0

Karen (yes, another doctor) tells me that if I go any lower, she's going to have me transfused.

If people thought I was crazy asking to donate blood after finding out IVIG comes from blood, just wait.

If I can't get my iron levels back up before next month I'm really going to be asking people "what's your blood type" right after they greet me.

Rainy Days and Mondays

There's no better way to start off your week than by being stuck in the arm first thing in the morning for bloodwork.

Happy, happy Joy, joy

Labor Day 2005 – Labor (verb) 1. Work hard 2. Struggle to do something 3. Move with difficulty. i.e. not able to bathe or take a shower by myself, not able to go up stair without help, having to use a walker.

Labor Day 2006 – Labor (noun) 1. Physical work. ie. doing my own laundry, then cooking chicken, collards, saffron rice with onions, red peppers and shrimp; baking cornbread and carrot cake.

I can’t do this alone any longer.

I’ve taken my script for WELLBUTRIN XL and had it filled.

We shall see how things go from here.

What a day, what a day.

First – scheduled for IVIG today.

Second – needed to get the Kia to the dealership before I went to Rex. Couldn’t get the car started, so I called for a tow. An hour later, I called the Rex to let them know I was running late. Then I called back to find out where this person is. He was supposed to be up the street. 20 minutes later I call back again. It doesn’t take that long to come down the street.

Despite the fact that I have the Kia’s hood up, the driver goes right past the house.

We finally get to the dealership and I’m on my way to Rex.

Third – Arrive at Rex only to find out my IVIG isn’t waiting for me. That was the reason I called to let them know I was going to be late, so the pharmacy would go ahead and mix the IVIG anyway. It takes an hour to mix.

I finally get hooked up and after about an hour, they turn up the volume and run the IVIG wide open.

Forth –It’s time to re-apply for aid after my treatment, Rex sent me a bill for almost $1200.00. I need to see the Financial Aid Department.

Fifth – In the Financial Aid Department and I find out I’m not eligible for the same amount of aid as I received last year. Excuse me?? My IVIG from last July until now cost over $250,000.00. I find out I qualify for 60% in aid, which is better than nothing. I should also quality for the “chronic / catastrophic” category as well. I mean the first word of my disease is “Chronic”. If so, that should give me a few more percentage points. If so, my monthly Rex invoice will be about $300.00. The woman then wanted to know if I needed to set up a payment plan. Hmm, let’s see - $300.00 per month for the next however many months? Duh – I think so.

Sixth – I finally get picked up from Rex and go get my car. It’s ready. The mechanic tells me that he’s had problems with the battery because it won’t hold a charge. Excuse me?? Does anybody listen to me?? I told him that when I dropped the car off this morning.

Seventh – I’m finally home.

I’m nauseous, have a headache and my arm hurts.

Ok, what happened to my legs?

I am one sore sister this morning. I haven’t felt this much leg pain since this time last year.

The day I expected to be sore, which would have been on Sunday, I wasn’t.

What gives with this seriously delayed reaction?

Ok, what happened to my legs?

I am one sore sister this morning. I haven’t felt this much leg pain since this time last year.

The day I expected to be sore, which would have been on Sunday, I wasn’t.

What gives with this seriously delayed reaction?

I did it! I took my cousins to Six Flags America on Saturday.

I haven’t been to an amusement park in over two years. I was able to converse the park, get in and out of the rides without any problems and just hang out and have a good time.

The only exception was when we arrived in Hurricane Harbor; all of the attractions required a person to climb steps, and there were just too many steps for me to continuously climb. For the remainder of our time in the “Harbor”, if they wanted to go on an attraction, I just waited for them at the pool when they came down. I went on one of them, but that was it for me.

The only other issue I had was my blood sugar bottomed out. I knew I was going to be more active than normal, so I made sure to eat and keep hydrated, but right before we were leaving Hurricane Harbor, I felt it coming on. I found the First-Aid stand in Hurricane Harbor, but they didn’t have a meter. So I went to the official First-Aid station. They didn’t have a meter either. What??

My cousin walks in as the Medic is explaining to me about Maryland laws and why they don’t/not allowed to have a meter for someone to check their blood sugars. Oh Please. In the meantime, the Medic has Glucose Gel that he could give me. Don’t think so – Nasty stuff. Somebody just go get me a candy bar.

All-in-all, we had fun and a good time was had by everyone.

We’ve already bought our Fright Fest “Twickets” for sometime in October.

You know who to give the Praises to!!

Good morning People!!

It’s 7:30am and I just finished cutting my grass this morning.

Did you hear me?? I said, that I, yes I just finished cutting my grass. Something I haven’t been able to do since last year.

I’m tired. I’m going to take a shower and a nap.

Once again give up the Praises!!

Had my GI Consult this morning. What a way to start the day. Well at least it’s Friday.

After reviewing more test results and my medical history (and the families), they have decided to do both the Endoscopy (upper GI tract) and Colonoscopy (lower GI tract) both on the same day. How about that? A doctor doing something that actually makes sense.

Depending on the outcome of the tests, I may require a third test that involves me taking a “horse pill” which is actually a camera that will take a picture of my digestive tract every two seconds once swallowed. Let’s hope not.

That reminded me of a conversation I had with my Kidney doctor. He was showing me a snapshot of my left kidney and saying how good of a picture it was. My response was something along the lines of “why can’t I take a decent external picture?” Now I might have pictures of my digestive tract to accompany the kidney? I’m not even trying to think about that.

Anyway, the whole thing is supposed to take about three hours and I’m going to need someone to drive me home afterwards, and I’ll be out for the remainder of the day.

I have to be on a “clear liquid diet” the day before the procedure, drink some nasty (lemon-lime) prep as well to “cleanse my colon” and nothing to drink after midnight. It’s going to be a long Sunday in September.

I’m having my IVIG today. Kaye and Dawn (the nurses here) are wonderful and we have a nice relationship. Even though we have been doing this for over a year, we are all looking forward to the day where I don’t need to have IVIG.

One of the advantages (if you could call it that) of this whole “experience” is not having a cycle every month.

I don’t know if it’s the CIDP, if I’m about to enter the era of “personal summers”. Whatever it is, I like the fact of not having a cycle. I certainly don’t miss it.

Slept very well last night. I must have because I was up too early this morning. I went for another walk this morning. I forgot how HOT & HUMID the beach is first thing in the morning. Even still, I wasn’t the only person out and about. There where plenty of joggers, bikers, and skaters out this morning. It felt great to “be a part of that number”.

Later that night

I’m definitely getting my strength back. Up early this morning and late to bed tonight; or truth be told, early Sunday morning.

Pass the Blessings

Spent today in the cutest little cottage in VA beach. Mother and I went for a nice walk this evening.

Today is my anniversary date.

Yep, yep. It’s been one year to the day since my butt hit the kitchen floor and my world as I knew it drastically changed.

As I sit here reflecting on the past year and ALL the changes my family and I have gone through dealing with this disease, I’m reminded once again of how truly blessed I am.

In the past twelve months, I’ve gone from:

being in good health and hardly seeing my GP to seeing doctors / hospitals twice a week for months.

having the ability and strength to do just about anything I wanted to not being able to do the simplest of things such as unscrewing the top off a soda bottle;

able to walk my dog for miles without getting tired to not being able to walk to the driveway and back without being exhausted.

needing a walker and a cane just to navigate, and then realizing it’s not a wheelchair friendly world or workplace.

having good nights sleep naturally to becoming a “dope fiend” at bedtime just to get to sleep.

realizing the “systems” (DSS, SSI etc) you’ve paid into all these years aren’t able to help you, or you have to fight to get any help at all.

There’s a lot more that I could list, but there is really no need. The point is I’m still here, in better health (mental and physical) and I keep improving daily.

We are all survivors.

First and foremost I MUST give Honor and Glory to GOD!

Secondly I need to thank my parents, especially my Mother.

"I have no idea when I’ll get the test results back, put if I hold true to form, it will be negative. I’m always “stumping the tech’s”.

The saying of “if it’s not one thing it’s another” seems to live in my space these days.

Ok, I didn’t’ stump the tech’s on this one - the damn thing came back positive. This means I’m bleeding out somewhere. Cheryl wants me to have a consultation with someone in the Gastro-Intestine field. I really don’t want to and may have said as much when speaking with her. She of course reminded me that I do have the right to refuse.

Oh Please!

Let’s get real here. With everything I’ve been through in the last twelve months, I’m not about to refuse treatment.

So I’m going to be scheduled for a GI consult and they will probably do the big “C” test. Un huh the Colonoscopy. And here I was thinking I wouldn’t have to deal with this until I was at least 50! At least I’ll be sedated during the procedure. My biggest worry is being a diabetic and not being able to eat the day before.

I’m going to try not to worry about this and enjoy my weekend.

I’ve finally finished the “stool test”. I dropped that card off this morning. Yea!!

I’m not much of a red meat eater, but the ONE time when I couldn’t have red meat is when I had cravings for steak, hamburgers etc, and people know how much I LOVE cantaloupe and I couldn’t have that either.

I have no idea when I’ll get the test results back, put if I hold true to form, it will be negative. I’m always “stumping the tech’s”.

On a serious note - things are going much better these days. The leg pains aren't as bad as they used to be. It might have something to do with the fact that I'm holding my own with the Topamax.

Edema has taken another vacation and I'm hoping it's an extended one this time. I can almost wear my regular shoes again.

I'm still having some numbness and tingling, but I'm chalking that up to the drugs.

Okay,

I’m seriously trying not to freak out here.

The numbness and tingling is back in my toes, and face.

Since it was determined that the leg pains were not caused by any of the med’s I was taking, Cheryl told me to start re-taking them again. So, I’m praying that the numbness etc is because of some side effect of one of the medications that I’ve started taking again.

I got my second set of test results back. I still have some kind of infection going on, but not as severe as before and I’m still anemic, but not as severe as before on this either. Cheryl wants me to do yet another test, so she asked me to come by and pick up some stool cards. This is going to be interesting. After reading the directions for the test, I know it’s going to be next week before I can even think about doing this.

Went fishing today, on a pier at Ocean City, MD and a beach in Delaware. It was at the beach that I had another breakthrough.

Walking in sand takes a lot more effort than walking anywhere else; but I was able to do it.

I went to the edge of the shore to take a picture, and as the waves were coming in I automatically backed up on my toes!! Do you hear me people?? It was so automatic that it wasn’t until some time afterwards that I realized what I had done!!

Giving up the praises!!

I went to aqua therapy today. I’ve been moved up to Level 2 at the pool. Level 2 is actually a water aerobics class. I actually managed to hang with the class AND walk out of the pool without any problems.

I’m somewhat worried, I felt too good when I left the hospital. My legs will probably wait until later tonight or tomorrow morning to hurt from the exercise.

Today is my Birthday!!! Yea!! GOD has been good to me for I’ve a lot more to celebrate this year.

I felt so good; I actually managed to walk Mister the whole circle today. I haven’t been able or done this in a long while.

Good news: my leg pains have eased up over the weekend. I don’t know why, but I’m not complaining. I just hope it lasts. I wish I could say the same for this Edma.

My lab results are back – more good news: my A1C’s are still 6.0%! I don’t know how I managed that, because I was sure it would be higher this time, but once again, I’m not complaining.

Bad news: my Cholesterol is above 200, my CBC’s are 16.9 and my Hemoglobin is 9.9. Translation means, I have an infection somewhere and I’m anemic (again). Cheryl is of the opinion that the anemia may be due to the continued Steroid use.

We have no idea why my CBC’s are high or what the infection might be. I wouldn’t be surprised if it’s another UTI (Urinary Tract Infection); between CIDP and the diabetes: I’ve had more than one since last July.

Test / My Results / Range
A1C = 6.0% (< 7%)
Total Cholesterol = 215 (need to do better)LDL Cholesterol = 128 (0 – 130)
HDL Cholesterol = 62 (this is good)Triglycerides = 124 (< 150)
Glucose = 92 (within range)Hemoglobin = 9.9 (on the low side)
CBC’s = 16.9 = (4.0 – 10.50) Too high

Stopped off for labs this morning. Still trying to find a cause for me leg pains.

I also saw Dr. Schecter this morning as well. More good news: she has decreased my Prednisone intake again and added a week in-between frequencies of IVIG. That makes my IVIG’s every four weeks instead of every three, and the steroids are down to 15.5mg (per day) from 60mg (per day). We also talked about the pro’s and con’s of taking Cymbalta. We decided that this would not be the best course for me at this time.

Austin and I went to Luray Caverns today. This was an exercise in every sense of the word!! I’m sweating like crazy, going down steps, up inclines, down inclines and up the steps!! I’m tired and my legs are burning. The best news of all – I was able to do the course!! I’m sooo much better than this time last year.

It is HOT up here!!

I’m up in the Shenandoah Valley enjoying the “fresh air and county side”. At least my legs don’t hurt as much up here, which is a very good thing. I’m supposed to go site seeing and fishing later today and I don’t want to miss out on anything.

Here we go again. I saw Cheryl on Friday. My blood pressure is up, but considering the fact I’m in constant pain, that MAY have something to do with it.

Seems I’ve stumped the tech’s once again. According to all the tests results, I shouldn’t be in any type of pain from anywhere. Oh well. It seems like I’m the exception (again).

Cheryl is sending me back to see Dr. Schecter regarding a drug called Cymbalta for the leg pains.

We also discussed my concern with the weight gain I’ve experienced. Cheryl told me that as long as I’m taking insulin, I’ll experience weight gain. I also found out that while on insulin, the closer I get to “target A1c’s” the chances for weight gain increase. Talk about your “catch 22”. Somehow, they forget to mention this little tidbit to me before I started taking insulin. Being on prednisone doesn’t help weight loss at all.

Yesterday was a GREAT day!!

Mister and I spent most of the day at Jordan Lake fishing (caught four Bass & a Bluegill) and wading in the water.

Today is not so good. It’s been raining all day (we do need this rain) and it’s much cooler than yesterday.

I tried not to overdue it yesterday, but I may have. I’m spending a good part of today just “chill’n”

I’m sick and tired of being sick and tired. I would like to have just ONE day without being in pain.

I’m seriously considering going back on the Amitriplyn – these muscle aches are getting worse.

After all this time working to regain the strength I lost when the CIDP was running rampant, I now have these muscle aches to contend with. I’ve cut back on walking Mister from three times a day to twice a day because my legs hurt. And some evenings, we don’t make it far from the front yard.

I refuse to lose the ground I’ve gained.

Okay – Good news is that my latest blood test came back “normal” so I can start taking Zocor again. The bad news is we don’t know why I keep having leg pains since it’s not an adverse side effect from the Zocor.

Cheryl and I are playing “tag” with appointment dates and times.

Here we go again.

I seem to be in yet another perpetual state of swollenness, and I don’t have any idea how long this “spell” will last.

Yet, I can't really be too upset. This time last year I was in Rex Hospital for a week getting my first of many IVIG infusions; thankfully, I haven't had a reason to be re-admitted.

I've reached another anniversay date.

Went down to Spring Lake to spend some time with my parents. Turns out they were at selling hot dogs, hamburgers etc the Annual “Spring Fling” event. Hung out with them until about 6pm. I’d started to swell long before then.

I’m happy that I’m able to “hang” at these types of events, but at the same time I’m frustrated when my body still turns on me.

Man my legs hurt! I don’t know which is to blame; the Zocor or the fact that I had aqua therapy after a week absence yesterday. And what is the deal with this eye twitching thing? The muscles under my left eye have been twitching off and on most of the morning.

I’m back in the pool today, I missed last week due to the fact I needed to pick up my car from the Kia dealership and it STILL has problems with it. Oh well.

After my workout (still able to climb up the ladder), I found out that Wake Med is changing the dates and times for Independent Class starting May 1st. As the new class times are in the mornings, I’m no longer going to be able to have aqua therapy on Wednesday’s.

Sonia was telling me about another place here in Raleigh where they have a “real” therapy pool AND they take our insurance. I’m going to have to ask her about this and where they’re located and their cost for sessions.

I’ve been playing “phone tag” with Kim (Cheryl’s nurse) most of the day, only to be told that Cheryl is not going to change my script for Zorcor until I have another lab test done first. Get Real! What is the point of testing me now? I’ve already stopped taking the stuff for almost two months now, so any results are going to be false or at best “inconclusive”.

Oh well. I’m going to stop by their office before I go to Rex for my infusion on the 27th.

Had my appointment with Dr. Schecter today. My strength has improved greatly; I’m still able to get off the floor , which is a good thing since I fell when I was out with the dog a few weeks ago. But as I told Dr. Schecter, I’m putting that down to a mis-step over uneven terrain.

I’m still having leg pains and I’ve stopped taking the Zocor (Lipitor substitute), but according to Dr. Schecter, it may take a couple of months before it’s completely out of my system. I emailed Cheryl to see if I can take something else in the meantime. My insurance will cover lovastatin, Crestor, Vytorin and I’m hoping one of these is a generic.

I’m actually fighting with my weight. I’m at a point where I’m not happy about it at all.

Other than the weight issue, things are going okay. Dr. Schecter has reduced my Prednisone intake down to 17.5mgs per day and leaving the IVIG infusions to every 3 weeks.

Alright now, things are getting strange around here. We (the doc’s) all agree that my legs should not hurt the way they do. But no one knows why they are hurting since it’s not the medication(s) I’m taking.

Good news: the numbness and tingling in my toes and feet is gone.

Bad news: my feet and legs are starting to swell again.

Good news: Mister and I went for a long walk today.

Bad news: I fell

Good news: I was able to get up and hobble home.

I went to one of my cousins’ wedding this weekend. She’s from my mother’s side of the family. I’m not really sure where she falls in line in the family tree, but who cares, family is family, so it’s all good.

I found out that I walk up inclines fairly well and my confidence has returned, I’m much better at steps than I used to be. It still hurts, but not as bad as it used to.

Well my anniversary date of when I was “officially” diagnosed with CIDP has arrived.

It feels strange, for in one way it’s certainly nothing to celebrate. But then again, it is; I’ve progressed so much since this time last year I want to shout and tell the world my testimony.

And I do, every chance I get.

My appointment with Nancy went VERY well. I walk like a sober drunk, which means I walk fairly well once I get started. I’m able to stand on one leg, with each leg without holding on to anything, I can walk on my toes and heels, and I’m able to squat and get back up unassisted as long as I don’t go too low, (but normal people have this issue) but most importantly of all – All Of My Reflexes Have Returned!! PRAISE GOD!!

It is a beautiful day today, so why my legs hurt so much?

I’ll be glad when I see Dr. Schecter tomorrow. This is one of the questions I’m going to be sure to ask her.

Today is the bi-annual meeting of the local (North Carolina) GBS/CIDP group. It’s a chance for us to come together and fellowship and to see what’s going on in the world of GBS/CIDP. Today we had a panel of various types of doctors to discuss new treatment options, therapies, pain, fatigue, balance issues and answer questions. Once again, the two hours passed all too quickly.

I was distressed that I didn’t see Patricia there. The last posting from her stated that she was afraid that she was having another relapse.

I really worked out today in Aqua therapy, actually starting sweating while in the pool!

I’m still able to climb up the ladder to get out of the pool AND I’m strong enough to actually "run / jog in place" in the water.

Yeah me!

I’m going to have to cut back on my Aqua Therapy sessions.

Because our company doesn’t have “sick days”, each time I go to aqua therapy or for my IVIG, I have to use my vacation time. I wonder about this, but I’m not going to argue the issue.

I have less than 20 hours of vacation time left over from last year and I need to save this year’s vacation time for anything (God forbid) that may up and I would like to be able to take a couple of “real” vacation days this year.

I need to consider going back to Pullen Park Pool. They have a therapy pool, but it’s not the same as the one at Wake Med.

The therapy pool at Pullen is in the same area as the regular pool, so the water temperature (and the area around it) is not maintained at a constant rate, and the depth of the water varies because of the way the pool is designed (deepest corner is 3 ½ maybe 4 feet); I’m not going to be able to work out the way I need to.

I could use the 4 foot lane in the main pool. The water is cooler, but as long as I’m moving, I should be okay. Getting in the water is not going to be a problem; it’s being able to get out of the pool. Pullen doesn’t have steps or a lift in the main pool; you get in and out with the ladder.

The main issue is that Pullen is open after 5pm, it’s here on campus and I can go right after work.

I’m doing real well and I want to keep “holding my own” for as long as I can.

Decisions, decisions.

I had my IVIG today and things didn’t go well. I was not able to get my regular brand of IVIG, so they switched brands on me (again). This one is called Carimune ® NF and I hit a few of the "Adverse Reactions" (side effects) head on. First I was running to the bathroom, then I started getting a headache, and to top it off, the nausea hit.

Since it was a different brand, it needed to be infused at a different rate; so I didn’t get out of Rex until after 3pm, and I’m usually done WAY before then.

Part of me thinks I should be happy that I can get ANY type of IVIG, considering the fact there is supposed to be a shortage of the stuff, (or so we are constantly being told) but I'm tired of being the "test subject".

All in all, I’m soo happy with the way things are going. This was my 3rd treatment with the new three-week schedule and I don’t seem to have any "issues" like I did last year. So it seems my body is holding the treatments. YEA!!

I’m scared.

The pain in my legs has returned and no matter how much exercise I do, or how long and well I rest them, it’s not getting any better. I don’t want go start taking Amitripilyn again, (mainly because of the side effects) but I may need to.

I know muscle weakness can be a side effect of the prednisone, but I’m sure about muscle pain which could be caused by the weakness.

I just don’t know and the bad thing is no one can tell me for sure one way or the other. Steroids are tricky to begin with.

If muscle weakness IS one of the side effects, then I’ll deal with it as best as I can (maybe it will stop once the dosage is reduced), if not, then it’s definitely something that I need to address with Dr. Schecter when I see her again next week.

More good news, my latest test results are in and here are the results:

Test / My Results / Range
Total Cholesterol = 162 (< cholesterol =" 55"> )
LDL Cholesterol = 93 (0 – 130)
Triglycerides = 68 (< 150)
A1C = 6.0% (< 7%)

The weather for this weekend is supposed to be wet, cold with snow showers, so I’m not doing anything that would require time outdoors. I’ve noticed that every time the temperature drops the pain in my legs get worse.

My cough is trying to come back and I woke up this morning with a serious sore throat. It’s hard to accurately judge these types of things with the weather going up and down the way it is.

Out of town this weekend. A couple of good things about staying in a hotel;
1) you can have the heat as high as you want it, and
2) you can use all the hot water you can stand.

Wake up call:

I was working in the files today (something I’ve been putting off for a while) and after about an hour and a half, I broke out into a cold sweat and really, really needed to sit down.

I’m hoping it’s the residual effects of having a cold that have caused my sudden loss in strength.

If it’s not one thing it’s another. I was feeling pretty good this morning so I decided to walk Mister down by the substation and let him run for a while and we got caught in the rain.

When I saw Cheryl on today she wasn’t able to give me a prescription strength cough medicine because I’m allergic to Codeine, so she gave me an antibiotic instead. I questioned her about this because you don’t normally give antibiotics for colds. She agreed, but I’ve had this cough for two weeks and neither on of us wants it to grow into anything worse.

I had my IVIG yesterday and because I kept coughing, it was my turn to go into the private room. I like the room, mainly because it’s definitely warmer in there and I don’t need a blanket.

I went to see Cheryl today for my regular check up and to see about getting something in prescription strength for this cold/cough.

Since my immune system is still suppressed, she was going to give a prescription strength cough syrup, but since I’m allergic to codeine, she has given me some antibiotics to help clear up my cold/cough instead and told me to look for a particular type of cough syrup that I only take every twelve hours.

Sound pricey to me. Oh well. If it works, it’s better than hacking and coughing all night long.

I saw Dr. Schecter today and we are very happy with the results.

I’ve lost some weight (about 7 pounds); my grip is stronger than last time and my reflexes are definitely getting stronger. My knees actually jerk when hit with the rubber mallet. My arms are still a little unresponsive, but they are getting there.

She also lowered my prednisone dosage again, down to 22.5 mg per day. Nancy said that once you start lowering the dosage below 20mgs, you need to be careful, because the body will really start tot notice the difference in the amounts.

Once the six/eight weeks of this lower dosage is up, we are going to try a once a month schedule for IVIG again.

Busy weekend - hacking, coughing and not much sleep

I have another Cold – the battle is on.

I accomplished two (2) things this weekend.

1. I now have the ability to get up off the floor.
2. And I can also get out of the bathtub alone.

Praise GOD! Yeah Baby!!!

Hah - I can do squats again (out of the pool) and pretty soon I’ll be able to get up off of the floor by myself.

People with bathtubs beware! - The day is coming where I’ll be able to get out of the bathtub unassisted as well.

Thanks Mother!

In a brief conversation, a man asked a woman he was pursuing the question "What kind of man are you looking for?"

She sat quietly for a moment before looking him in the eye and asking, "Do you really want to know?"

Reluctantly, he said, "Yes."

She began to expound..."As a woman in this day and age, I am in a position to ask a man what he can do for me that I can't do for myself. I pay my own bills. I take care of my household without the help of any man...or woman for that matter. I am in the position to ask, "What can you bring to the table?"

The man looked at her. Clearly he thought that she was referring to money.

She quickly corrected his thought and state, "I am not referring to money." I need something more. I need a man who is striving for perfection in every aspect of life."

He sat back in his chair, folded his arms, and asked her to explain.

She said, " I don't need a simple-minded man. I am looking for someone who is striving for perfection mentally because I need conversation and mental stimulation."

"I am looking for someone who is striving for perfection spiritually because I don't need to be unequally yoked. Believers mixed with unbelievers is a recipe for disaster."

"I need a man who is striving for perfection financially because I don't need a financial burden."

"I am looking for someone who is sensitive enough to understand what I go through as a woman, but strong enough to keep me grounded."

"I am looking for someone who I can respect. In order to be submissive, I must respect him. I cannot be submissive to a man who isn't taking care of his business. I have no problem being submissive...he just his to be worthy."

"God made woman to be a helpmate for man. I can't help a man if he can't help himself."

When she finished her spill, she looked at him.

He sat there with a puzzled look on his face.

He said, "You are asking a lot."

She replied, "I'm worth a lot."

Happy Martin Luther King Day.

Scary night. Woke up sweating about 12:45 am, since this is not normal for me, I knew to check my blood sugar, and it had dropped to a 54. Good thing I had a Pepsi in the fridge for "these types of things". It’s been in there since Christmas.

6.00 pm – Just when you think things are going well –then WHAM!

It was a pleasant evening when I came home tonight and as I started walking Mister I decided to let him have his lead and see if I could keep up with him. Most of the time I just give him the lead and "stroll" along. All in all, I think I did pretty well, considering it’s been a very long while since I’ve done this.

As we came back to the house, I remembered I needed to get Mister’s dog food out of the car. By the time I got to my front door, I was struggling with the bag of dog food and out of breath.

This @!#%@! disease is getting on my nerves!

The soles of my feet hurt and the numbness is spreading; my legs hurt as well.

We CIDP’ers don’t need barometers or weather personnel to tell us when the weather is changing, this disease does it well enough for us.

Today was my first IVIG treatment of the year. We are now on a three - (3) week schedule in-between treatments.

We know it’s the combination of the IVIG and Prednisone that is working for me. Now we need to find out just how much of the Prednisone (smaller the dose, the better) I will need in my system to maintain my strength and for the IVIG to continue to work.

The next few months will be a little scary as the dosage gets tapered down.

Went to aqua therapy today but we were kicked out of the pool because of the storm.

Had my appointment with Dr. Kline at UNC-Chapel Hill today. Dr. Kline is the area CIDP expert. Testing was extensive. Dr. Kline disagrees with Dr. Schecter on the timing issues of the IVIG treatment and the fact that I’m still on steroids.
The good new is:
a) I have more of my reflexes back, four out of six places showed up and with marked improvement.
b) The chances of my having another relapse are slim. As long as I continue treatments.
c) I don’t’ need follow-up appointments with Dr. Kline unless things get worse, or I choose to switch doctors.
The bad new is:
a) I have memory loss issues, which is part of the disease.
b) I sometimes have leg pains at night, which is part of the disease.

I’m sore and my legs are hurting this morning, but that might be weather related.

Mister is upset with me this morning. It’s one of those lovely cold mornings and he is ready to run, but even with "layering up", I just can’t stand the cold the way I used to. Maybe tomorrow will be a better day for the both of us to get out to the park.

Went to see Cheryl yesterday. More blood was drawn for more tests, but she is happy with my overall progress. We are both just a little concerned about the fact that I’m still congested and taking Mucinex, so she gave me some antibiotics just to be on the safe side.

Feels good to be back in the pool for the first time after the holidays. I stayed in the water for 45 minutes. Yea me!

Get this, after my workout, I’m sitting at the light in front of Wake Med Hospital and I get rear ended by a city bus! Thankfully no one is hurt.

Honestly, part of me wished that she had hit me just a little bit harder. Come on now, a city bus? Can we say "Cha – ching?" and I could have just acted a fool and really waved my handicapped sign in everybody’s face and not said I was "fine". But those of us with common sense know that "GOD don’t like ugly", so I didn’t.

Thankfully I’m (and the car) all right. You have to look for the damage to the rear end of the bumper and the soreness I’ll experience tomorrow will be from the workout I had today. If I feel anything else (or worse), I have an appointment with Cheryl on Friday and I’ll just tell her what happened and get something then.

Back to work after the holidays.

Today I’m tired, my legs are stressed and my toes are numb. Strangely enough, I feel good about the way I feel.

I’ve gone from taking nine scripts (and multiple shots) to four scripts each day, (five once a week) and gone from taking 60mgs daily of Prednisone to 25mgs in five months all while getting stronger each day. I no longer need the daily dosage of pain medication for my legs each night to get to sleep and there are days when my pain levels are below a five on a 10-point scale.

Happy New Year!

May this year find Peace and Blessings to all my Family and Friends.