Happy Anniversary Mom & Dad!

Back from our Williamsburg trip. I don’t care what type of car we take; I will not do the "back seat" thing again. My legs are too stressed.

If the next trip is over 2 hours by car, I will drive my own car.

Gordon, LaShonda, Mom and I are going to Williamsburg to meet up with Aunt Virge and crew today.

It’s Christmas Day and I’m at my parent’s home with my family.
I’m truly blessed

Dear Santa,

All I want for Christmas is a hot bath*.

*and the strength I need to get out of the tub afterwards.

Went to PT today. Dan used his "strength meter" on my arms and legs. Once again it showed how much stronger I’ve gotten since my last visit. Dan suggested that I start going up and down stairs as part of my exercise reign to strengthen my legs.

I was looking at my calendar and I realized that it’s my anniversary, of sorts.

A year has passed since I first started having the numbness and tingling in my toes and then my feet.

These were the first symptoms of CIDP.

Instead of going to the Dog Park this morning, Mister and I went for a walk instead.

Then we started on raking the leaves in the back yard. Had to give that up, I almost fell over when trying to bag the leaves. Just as well, it’s supposed to rain / sleet tonight.

I went into the house and vented. It’s a week before Christmas and one would think that some of these overgrown children around here would be out trying to make some last minute change for the holidays, after all, games for these Xbox 360’s aren’t’ cheap.

Oh Happy Day!

Went to Aqua Therapy today (and it was COLD outside) and I was able to actually climb up the ladder and out of the pool!! I signed up for 5 more classes.

Cheryl signed my doctor’s note for more PT weight training, but I’m going to wait until after the Christmas holiday before I sign up for those classes.

I woke up this morning without any pain anywhere, so regardless of what happens; today will be a good day.

I took Mister for a walk before I left for work this morning, and when I came home from work, Mister and I walked down to the sub-station. I haven’t walked down there since July. We are slowly getting back into our pre-CIDP routine of walking at least two times a day.

I felt so good when Mister woke me up this morning we went to the Dog Park.

It was a lovely COLD morning. The dogs had a great time. The “parents” compared how many pairs of socks they had on.

Turns out the lower back pain and the aching in my legs is a part of my returning cycle.

I completely misread the signs. It’s no wonder, with everything that’s been going on and all the different med’s I’ve been on; I haven’t seen my cycle since July and to be honest, this is something I haven’t missed.

Life is definitely getting back to normal.

Had my IVIG today and everything stayed where it was supposed to. No IV mishaps when I went to the bathroom. Kaye taped the IV down so well, I could have tried out as an extra in "The Mummy” LOL.

After IVIG, I went to see Cheryl to review my latest pump results. We are happy with the out come.

The only thing I need to do is keep my carbohydrate levels lower than what I am.

I went to see Dr. Schecter today. Good news! Once again I’ve gotten stronger, and dare I say the "R" word - yup, yup remission is the word of the day.

Let the choir say "Amen".

I’ve made a "marked" improvement! Dr. Schecter and Cheryl (I saw her today for a quick minute & I’ll see her again tomorrow) are all so proud of the progress I’ve made in such a short time span.

Once again she has lowered the Prednisone dose by 5mg, so I’m now down to 25mg a day, and the IVIG is changed to once every 3 weeks starting in January 2006.

I want to feel good about the progress I’ve made, but at the same time, I’m kind of scared to; it’s like I don’t want to tempt fate by being too happy. Weird huh?

Okay, I walked out to start the car this morning and I was out of breath. So, no walking Mister this morning.

I was out of breath when I walked from the parking deck to the building as well. This is getting beyond stupid. I hate to say it, but it possible that I may have walking pneumonia. I’m hoping that I just have a bad cold with a serious case of congestion.

Today is a lovely 30-degree day. Just right for Mister to go to the Dog Park, but we won’t be there. I’m going to spend this weekend doing the Mucinex thing. I’ll see Dr. Schecter on Tuesday and I get my next IVIG on Wednesday and I want whatever this is cleared up by then.

I have alot to be thankful this year.

I am truly blessed.

I had my IVIG today and it didn’t go as well as usual.

The morning started off fine, until one woman, who came in for a transfusion kept coughing. Her son said that she had a cold or was getting over one, but the way she was hacking and coughing didn’t sound like a cold to us. The nurses moved her into the private room for her transfusion. I hate to say this, but the rest of us in the room were very glad they moved her. Each time one of the nurses needed to attend to her, they put on a face mask and gloves before they entered the private room.

The next thing – I went to the bathroom and just as I was going to wash my hands, my IV comes out. What a mess! My VERY expensive medication is running all over the floor, my arm is bleeding and I’m trying to stop it and get the bathroom door open at the same time for help. I finally get the door open, call Kaye and all three nurses come to help me.

After all the excitement has died down, my IV needs to be restarted. Problem: we can’t use the same vein. Kaye ends up putting the IV in a vein in my wrist. Ouch! My wrist still hurts.

I’m paying for yesterday’s excursion to the Dog Park.

It was downright cold yesterday morning.

I’m still trying to understand these adjustments for CIDP. I made sure I was "layered up" before I left the house and didn’t stay out long, yet this morning I have a raw throat, stuffy nose and a sulking dog.

It is COLD outside today! We had a hard frost last night.

Mister and I are off to the Dog Park today, and then we are going to PetSmart to get his nails clipped.

Was talking with Kay at the Day Treatment Center at Rex. I’m trying to get the date of my IVIG changed. I need to have it done on the 23rd, but Kay wants me to have it done on the 21st. The reason for the change is this; they want to keep the 23rd open for people who may need emergency blood transfusions before the holiday. Well, I can understand that, but I’m kind of in a similar situation. I’m trying to get my infusion done as close to the holiday as well.

Kay suggested I actually check into the hospital to get my infusion. I told her just to forget that idea. She’s totally lost it. The last thing I want or need to do is check into the hospital the day before a holiday. T here is no telling where or what part of Rex I’d end up end or how long my infusion will take to complete.

Having some issues with my blood sugars for the last few days. My afternoon and evening readings have been running higher than usual for some reason and I’m having a problem getting them back under control. I’ve sent an email to Cheryl for her input and I’m waiting for her response before I make any adjustment to my Basal settings on my Insulin pump.

I also called my insurance company to make sure this pump is covered under my renter insurance. According to the Mini Med site, "The Paradigm Platform has a list price of $6195.00". Unbelievable!

Hard to believe this little piece of equipment cost so much.

Went to Aqua Therapy today and had the pool all to myself.

I kept an eye on the time today and didn’t wear myself out.

It was nice. Something else nice happened.

I managed to climb up two of the ladder steps.

I’m getting there!

No sooner than I get one thing regarding CIDP under some sort of control, than something else pops up.

The "thing in my throat" is related to CIDP. It seems that a few of us have this problem (dysphagia = difficulty swallowing) and it’s something that bears watching. I’ll be sure to mention it to Dr. Schecter when I see her in December. Damn!

Thank GOD for whoever started the Guillain-Barre Syndrome website. It has truly been a comfort. I’ve been able to find information on this site regarding issues I’ve gone through when it hasn’t been available anywhere else.

It has truly been a blessing.

Don’t know what going on. Been feeling nauseous for the last few days and something is growing in the back of my throat.

Woke up Saturday and Sunday with a sore throat. But with this crazy "A" weather up here, what can we expect? Saturday morning it was in the 30's, but that afternoon it was in the 70's. Sunday was in the 70's, today it was around 76.

Decided not to take the flu shot this year. I'm just too scared.

I'm praying I made the right decision.

My throat is sore AGAIN this morning.

I just need to give up sleeping late as long as I’m taking these diuretics.

My legs and feet are acting up again.

The cut looks okay today.

What a morning! It’s nice and chilly outside. Mister and I are off to the Dog Park, after I pop a cough drop that is. My throat is raw. I need to nip what ever this is today.

Happy Birthday and Veterans Day to my Father.

These shoes are just a little too big and something slipped down between the inside of the shoe and my foot and managed to cut the heel of my left foot.

It's a good thing I check my feet on a regular basis.

Thinking about in-home daycare: http://www.geocities.com/michelles_daycarehouse/

Had my IVIG today and everything went well.

I felt so good today; Mister and I went for a walk. We walked down the street where the substation is. I haven’t walked down that part of my housing area in months.

My strength numbers have improved, but I still don’t have the strength I need to get up. I found this out as I was cleaning the commode. I stooped down to reach the bottom part and I got stuck. Good thing the support rails were there to help me get back up.

I had my PT evaluation today. Good news. My strength numbers have increased. All that work in PT has paid off.

Yea me.

Rough evening/night last night. My legs and feet were heavy and aching, ended up taking two Amitriptylns before the night was over. Between getting up to go to the bathroom and letting Mister out, I ended up sleeping later than I wanted to this morning.

I posted my question regarding pain on the http://www.guillain-barre.com/ forum to see what responses I would get.

Here is a response from DocDavid: "the answer is quite simple, neuropathic pain tends to increase in the evening and is worse at night. This applies to any neuropathic pain, whatever the cause. DocDavid"

Doc David is a REAL MD, what field I don't remember. But like all of us, he is well versed in CIDP.

I wish someone could tell me what is it about the nature of this disease that causes us to have so much pain at night.

This is a question I want answered when I go to Chapel Hill in January.

Just got my test results from Cheryl.

"Your labs look good in that A1C was down from 8.5 to 7.1. However, your serum protein continues to decrease which means you will continue to have swelling. I need you to go on dietary supplements daily - like Ensure - they make one for diabetics - get that one. We will recheck your serum protein levels in a few weeks."

Went to PT today and did upper body workout. Managed to increase the weights on one of the machines. I got my final clearance for the pool, so I signed up for that today as well.

The great flu shot debate is still raging. No one has yet to answer the question of should we get a flu shot. I've checked the http://www.guillain-barre.com site and they're debating the issue. Some say yes, but most are saying no.

Cheryl has me down for a flu shot, but I've asked her to check with Nancy before we go through with it.

I'm also going to ask Cheryl for a FULL time return to work note starting next Wednesday. I won't know unless I try.

Here is a post from one of my online pals regarding a treatment option for CIDP:

ME AND MY NEUROLOGICAL ILLNESSChronic inflammatory demyelinating Polyradiculoneuropathyresponding to Rituximab

Dr.D. D. Bodley-Scott Manor Lodge, Lower Pennington Lane, Lymington, Hants, UK;E-mail: ddbs.lymington@btinternet.com

Having retired from general practice 4 years ago I am writing an account of an unusual disease responding to an unusual treatment.

Inexplicable bouts of evening fever occurred through 1998 when I was 57-years-old. At first I did not associate these with the onset of bilateral ulnar nerve paraesthesiae in early 1999. My partners had kindly purchased a lap top computer for me so that I could also work as practice manager.

I had spent hours learning to use it, sitting in an awkward position, so I assumed I had a compression neuropathy of the ulnar nerves.I continued life as normal, working hard, riding my horse on my half day off, and running a watch repair business in the evenings (I had qualified as a watchmaker 25 years earlier).

I ignored the numbness that developed on the lateral borders of both feet because I had a previous history oflumbar disc disorder. At the end of 2000 I began to notice unusual fatigue and shortness of breath when ascending stairs to see patients, eventually I found it impossible to do a full day’s work without a rest in the afternoon. I took myself off for routine bloods and discovered I had a haemoglobin of 9.2g/dL and a serum creatinine of 250 umol/L. I consulted my own general practitioner and went to see a renal physician, and a neurologist who told me I had a compression neuropathy. Relieved that I did not have motor neuron disease, I failed to query the unusual fact that I apparently had four separate nerves being compressed. Investigations by the renal physician, which included a vasculitis screen and renal biopsy, failed to find the cause of my small contracted kidneys with chronic interstitial change.

I retired in May 2001. Erythropoetin improved my anaemia and fatigue, I felt well, took my Border collie dog for a long walk on the marshes every morning and worked full time in my watch repair business. I played at the bridge club on Monday afternoons and attended Rotary lunches on Wednesdays. Life was great; my renal impairment deteriorated only slowly and the repair business was thriving.

One morning in July 2002, walking back from the marshes, my legs failed to move forwards. Fortunately my Border collie was already back on her lead – she went into power-drive walk and towed me home. I managed to hobble at home with a walking stick but was not safe enough to walk the dog. One evening when taking off my jersey I fell over when my vision was obscured, thereafter I had to undress whilst sitting down. The occasional evening chills and fevers continued. Shortly after all this, at a routine appointment with the renal physician, loss of position sense and sensory ataxia were confirmed leading to a rapid appointment with another neurologist. His clinical examination showed total absence of any tendon reflexes, symmetrical long sock and short glove sensory loss with gross sensory ataxia and weakness in several muscle groups leading to a diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), later confirmed by nerve conduction studies. Blood was analysed to exclude other causes of peripheral neuropathy, including protein electrophoresis to exclude paraproteinaemic demyelinating neuropathy.

Treatment started with prednisolone and azathioprine, which gave an initial, but unsustained benefit. The neuropathic pains then started. They began after lunch every day, it became uncomfortable to sit in my armchair, my buttocks were tender and the pain spread down the back of my thighs. By the time the news on TV started at 6 o’clock I had to stand or kneel to watch it, in the early evening the pain increased in intensity causing me to lie on my face on the sofa, crying out at times with the pain, achieving temporary relief by gently slapping my thigh.

Eventually I would go to bed with the strongest analgesic I could find and sleep for perhaps an hour. I would then awake with increasingly severe pain also affecting my upper arms. Analgesics had no effect at this stage, sleep evaded me, at times I would cry out with the pain, at other times weep. By 2 a.m. the pain would subside allowing me to sleep. In the morning I would awake at seven, gloriously free from the pain, so much so that at my morning appointments with the neurologist. I would not even mention it, yet it returned with equal savagery day after day. Finally after some months of pain I was admitted to a neurological ward for a sural nerve biopsy. I was not impressed by the skill of the junior surgeon undertaking the procedure so I was not surprised when the biopsy failed to show any significant abnormality. During my inpatient stay I asked the resident house officer if I could try gabapentin. The result was dramatic, I have remained free from pain ever since. Life that winter was complicated by the sodium losing nephropathy; on two separate occasions I lost 10 kg due to the associated water loss leading to dehydration, postural hypotension and vomiting. Eventually the excessive salt replacement put me into cardiac failure.

The relentless low-grade fever continued every evening for over 8 weeks resulting in full investigation for fever of unknown origin, but no cause was found. Recovery was further delayed by MRSA septicaemia resulting from the presumably unclean insertion of a central line for emergency haemodialysis. By early 2003 the renal failure was well managed by haemodialysis giving good biochemical control, but the CIDP progressively deteriorated: each week I lost a function that had been present the previous week. In addition to the bilateral ulnar neuropathy, both median and radial nerves were involved leaving just a little strength in abduction of my thumbs while the other muscles in my hands supplied by these three nerves were paralysed. There was complete sensory loss in a short glove distribution. My hands functioned like a pair of flippers, no grip was possible. Axonal damage had led to severe wasting of the small muscles in my hands.

I had to use a variety of practical aids for feeding and washing, my wife dressed me. I managed to move about indoors with a walking frame, I could attend Rotary lunches with help, but could no longer grip a card or use watch tools. There were still thirty partially completed repair jobs, and I shall be eternally grateful to the four watch repairers who completed those jobs for me.

Through 2003 prednisolone, azathioprine, intravenous immunoglobulin, plasma exchange, cyclosporin and mycophenolate were all tried; none of them arrested the relentless progression of the disease. The renal failure was well controlled by haemodialysis, the only limb muscles that continued to work were the upper arm muscles enabling me to use a powered wheel chair and to transfer with a sliding board. Social services turned up trumps, they supplied a powered hoist and carers every morning and evening to wash and dress me. A slotted strap round my hand held a spoon allowing me to transfer cut-up food to my mouth. The computer was now my lifeline, using the keyboard with one fatigued index finger became arduous; so I installed a voice-operated program which after perseverance became a very effective tool. A failing that seems to be widespread in the neurological field is the inability of some doctors to give adequate information and reference to other sources.

A common feeling experienced by myself and many others who have developed CIDP, is a sensation of utter isolation and loneliness; none of the seven medical partners in my general practice had heard of it, how do you explain it to friends? A search of the web brought me to two sites http://www.gbsfi/ .com and http://www.gbs.org.uk/ on which there are many expert patients and a wealth of knowledge. There are often medical, or anatomical queries so I log on every morning to do a ‘cyber surgery’. The voice operated program allowed me to continue in spite of almost complete quadriplegia. I raised a query about unexplained fever and have now had twelve replies from others in many parts of the world in whom fever of unknown origin occurred during the active phase of CIDP, many of them were also fully investigated for a cause of the fever, though none of their physicians associated it, as I do, with the active auto-immune destructive process. Realising that I had probably reached the nadir of my disease, I accepted that this was how the remainder of my life would be, one which in view of my family history and the renal failure was likely to be brought to a close by a myocardial infarct.

The major strain was on my wife as principal carer for most of the day and night, there is no official support to which a carer can turn. In a way, we were fortunate to have two friends also limited to wheel chairs; their partners were able to give somesupport and advice. Renal failure turned out to be a blessing; besides no longer having the inconvenience of passing urine from a quadriplegic body, 3 days away every week in the care of renal dialysis nurses relieved my wife of responsibility on those days. As in all chronic diseases, attitude is of prime importance. A cheerful face in adversity reflects on all who come into contact, so much so that people begin to seek contact. I was fortunate in being able to do the ‘cyber surgery’ each morning, giving me a purpose in life and the facility for helping others. After discussion with a neurologist more experienced in CIDP, the neurologist I was seeing suggested the use of Rituximab, an antibody against the CD20 antigen found on the surface of B cell lymphocytes.

Its use is established in B cell lymphoma and has shown promise in patients with the neuropathy associated with IgM paraproteinaemia. The possible adverse effects were fairly horrific, but I really had little to lose and no other options. I was started on intravenous infusions of 700 mg of Rituximab, which were repeated every 3 weeks until I had had seven doses. I could hardly believe the transformation. After the first dose I could partly flex my hand, a movement previously impossible as my hand had been paralysed. After 3 months muscle strength recovered in my legs, fatigue diminished and disappeared, the ataxia was less and the pain was reduced. I installed parallel bars and employed a neurologically trained physiotherapist. Six months after starting Rituximab I could walk with a frame, wash and dress myself and hold normal cutlery. Soon finger-thumb grip returned so that I could play cards. The crowning achievement was to walk my daughter down the aisle at her wedding.

ACKNOWLEDGEMENTS
I should like to acknowledge Prof. Richard Hughes and Dr. W.R.Gibb for their help and advice.

Feeling a little groggy this morning. I needed to take an Amitriptyln last night because of the pain in my feet and legs. They are really hurting this morning.

I’m up before 6.15am this morning. I haven’t done this in a long while. It’s just as well, I need to get used to getting up again. I plan to go back to full-time and I’ll need to be up about 6.15-6.30am anyway.

Was up and down going to the bathroom last night. I think it may because of the med’s. I’m not sure. I took them early yesterday morning and I was thinking they’d be out of my system by evening. Evidently not. I guess I need to get used to "running" again. My legs hurt worse this morning and it’s because of the Edema. It hurts just to bend my knees while sitting, which means the Edema is spreading up my legs and has now reached my thighs.

I have PT today and we are supposed to work on the lower body. With the way my legs are hurting, we may not be able to do a full workout today. We’ll see if not lower body, then we will try some new upper body workouts.

My legs are really starting to swell, my knees are hurting and the pain in my feet has increased to the point where it’s starting to really bother me.

Spent the weekend at my parent’s house.

I was able to go up the three steps on the deck by myself.

I also forgot to pack my booster seat for the commode, but it didn’t matter because I was able to get up anyway.

Yea me! The PT is paying off.

I saw Cheryl today, and I’ve gained about 20 pounds. Most of this is water weight because of the Edema. She is putting me back on the Zaroxolyn and she called Dr. Garrett for a script for Bumex as well. Bumex is going to be a problem; there is NO way I can take that and work as well. That script has me going to the bathroom every 20 minutes.

The best news is that my blood sugars continue to go down and come in line to where we want them to be.

Went to see Dr. Garrett today, the nephrologist, (kidney specialist) that Cheryl sent me to see because I was "spilling protein". The test results are not good. According to the numbers on the test results, I’m supposed to be scheduled for dialysis any day now. It’s a good thing Dr. Garrett doesn’t just go by the numbers and knows how to think for himself.

While he does agree there is some damage to my left kidney, it’s not as bad as it seems. I’ll go back and see him again sometime in December.

On the CIDP front: I’m beginning to have more pain in my feet again. And the swelling is returning as well.

Went for another round of IVIG today.

I'm scheduled to get IVIG twice a month for the next two months, so this will take me into December, about a week before the Christmas holiday.

I've been getting IVIG for about seven months now, and my reflexes are just starting to come back.

It's a start.

I should have known it was too good to last. Was up several times last night going to the bathroom.

My blood sugar was really high this morning. I’m hoping it’s because I took my last med so late last night. Then again, higher blood sugars may be the reason why I was going to the bathroom so much last night.

I’m going to see my neurologist this morning and get an update on my treatments and how far I’ve actually progressed. I know I’m stronger, but I also know there are things I still can’t do.

I’m hoping she can give me a "general" idea of what to expect from here.


Good news!

I’m getting more of my reflexes back! I now have reflex action or re-action in all four limbs. It seems the combination of Prednisone and IVIG is working, so much so, we are once again cutting back on the Prednisone dose. I’m now down to 30mg per day.

I asked Dr. Schecter about extending the time between IVIG’s to 3 weeks, but she said she wants to wait to see how I do with the reduction of Prednisone first. If I’m able to handle the reduced steroid amount without any adverse side effects, then she will see if I’m able to go three weeks between IVIG’s. If I’m not able to go three weeks between IVIG’s then we will know it’s the timing issue of the IVIG and not the reduced steroid amount.

Overall, we are both pleased with my progress to date.

Still sleeping through the night and no serious leg pains lately.

Went to aqua therapy on Friday and my legs are still hurting. I’m still not able to pull myself up the ladder to get out of the pool by myself.

I wanted to go to the State Fair this weekend, but Austin and I decided that it would be too much walking for me to do right now and since I didn't want to take the wheelchair, I'll go next year.

I was up at about 6.15am this morning. I’m still sleeping through the night.

My blood sugar was higher this morning than it’s been in a long while. It might be because I waited so late to take my evening dose of Prednisone.

My legs are bothering me today and the “shakes” are back with a vengeance. I’m hoping things settle down over the weekend because I have an appointment to see Dr. Schecter on Monday.

One more day to go.

Stayed at work until 1.30pm today, then went to physical therapy. Did the lower body workout today. It’s only three machines but they really work my leg muscles.

The only thing I want to do after the lower body workout is sit in a hot tub, but since I can’t get out of the tub by myself, that is still out of the question. For now anyway.

Today is Wednesday and I’m already TIRED.

My arms and legs are heavy and dragging by 7.00pm and my feet are starting to swell, which is the LAST thing I need. They really hadn’t completely recovered from the Edema.

My original plan was to be back to work full-time before the end of the year. To be honest, my confidence in my ability to do this is waning. My appointment for Chapel Hill is not until January, and I’m being advised to wait until after then, but things at work have made it necessary to rethink this.

The good news is I’m still sleeping through the night without any problems and my blood sugars are coming back in line.

Last night was the first night I slept COMPLETELY through the night without getting up AT ALL for ANYTHING!!!

Today was my first day back to work part-time.

This week will be a good gauge of how things are going to work out with the fatigue factor of CIDP.

Even though I’ve been preparing for this day by sitting at my computer at home for quite some time now, I’m still tired.

I have to wonder what I’m going to be like on Friday afternoon after a week of working part-time and doing physical therapy on Tuesday and Thursday.

Am I going to be ready for the next phase, which is adding aqua therapy into the mix?

Slept until 8.00 am this morning. I can hardly believe it myself.

I've been given clearance from my job to come back to work part-time starting on Monday, the 17th.

My PT insurance has run out so I need to sign up for extended PT w/Wake Med tomorrow.

I also found out that the Aqua sessions are not covered by my insurance either. If I want to do the Aqua part, I'll need pay out of pocket as well or use the city pools.

I had my IVIG today.

Today was my first time using this pump with IVIG.

The IVIG solution has a tendency to increase my blood sugar levels. With this pump, I was able to set a temporary basal rate while getting IVIG. This is really cool!

Only got up once during the night and slept until 7am. YES! This insulin pump is great. I'm still being monitored each day and we (Frankie) and I are still making adjustments to Basal units, timings etc. but things seem to be working out.

Austin is still here. Seems the 11.15pm bus was over full last night and the next bus out wasn’t unit about 3.45am. I told him about waiting until the last minute and taking that late night bus, in case things go wrong, but nooo, he has to have things his way.

Today is Monday and he’s missing a day of work because he didn’t want to listen. . Oh well.

Went to the office today. I’m supposed go back to work part- time next Monday. We shall see.

Up at 3.45am to check blood sugar. Couldn’t get back to sleep until about 4am. I haven’t done this in a while. Up again about 7am.

I was starting to sleep better at night and not getting up so much to go to the bathroom. It’s only been a week and the pump is making a difference.

The Edema is getting so much better. I can wear my tennis shoes again! My left foot is back to normal and the right foot is getting there.

Still having issues with numbness, tingling etc in both feet.

Austin is still here.

Austin woke me up at 3.30am to check on my blood sugar.

For today’s leg exercises, I drove the 5 speed while we were out and about today.

It’s a dreary day today. Warm, but cloudy with rain off and on all day today.

Slept until about 8am this morning! It’s getting better and better. I think the rain helped.

I’ve noticed that my blood sugars are quickly coming back under control with this pump. It’s a lot easier to control my blood sugars with the pump. I just have to remember to count my carbs for EVERYTHING and enter them into the pump before I eat.

I was able to change the reservoir for the first time without any problems and without wasting too much insulin. This insulin pump is not as bad as I thought it would be. I just have to get used to having something attached to me at all times.

I have physical therapy at Rex Healthpark today. I’ll need to decide if I can afford to sign up for the "Six Weeks" course. I want to, but $100 is pricey right now. The aqua therapy is covered under my insurance.

Austin is supposed to come down this weekend. We shall see.

I woke up to Mister whining to go out. It was 7.15am. Can you believe it? I don’t.

Frances from the pump was supposed to call about 9pm last night to review my pump numbers. She didn’t call until about 11pm, right when I turned out the light to go to bed. We went though the numbers and she showed me how to do a "correction’ when my blood sugar is too high. It was. I forgot Cheryl set my goals from 100 – 150 and that a 250 blood sugar is now too high. I need to get used to this. That has been "normal" for me for since July.

It’s a good thing I’m used to getting up in the middle of the night, otherwise I’d be ill having to get up between 2am – 3am to check blood sugars and do corrections.

My blood sugar was a 148 this morning. Pretty good for me.

Austin called last night. First time I’ve heard from him in a couple of weeks. When he called the first time, I didn’t answer the phone; I just let it ring.

I knew he would call back later. I answered then.

It was a strained conversation, but what did he expect? Just that, according to him, therefore, he got what he expected.

Up at 6.30am.

Didn’t sleep well last night but what else is new.

Needed to be up between 2am – 3am to check my blood sugars because of the new insulin pump. I’m going to be monitored for the first week to see how I’m doing on it.

Went to aqua therapy today. It was good to be able to get into a pool again, even if it only went to 4 feet deep. The warm water felt great.

Hopefully I won’t have any ill effects later today, because I think this will really be beneficial to my recovery.

Up at 6.30 am.

Slept most of the night without getting up to go to the bathroom more than twice! Cool Beans!!

It’s been a long while since I can remember sleeping well. .

I needed to take a Bextra before I went to bed last night, maybe that had something to do with it.

9.00pm
Had my insulin pump class tonight. It’s a little daunting being dependent on this little machine. It’s supposed to make things easier for me. All the basic and important calculations have already been done and programmed in, all I need to do is input the carbs and my blood sugars before I eat.

Up before 6.00 am.

Spent most of the night going to the bathroom every hour on the hour.

This new script Dr. Garrett gave me for this Edema is something else! It's called Bumex and it's supposed to "get blood out of a turnip".

Well....it's definitely getting liquid out of places......

It states "take twice a day". I don't know about this. I need to get some KINDA sleep, and I don't sleep well at night as it is.

Up at 6.30 this morning.

Spent most of the night going to the bathroom. Good thing I have the ability to go right back to sleep afterwards. Don't know why I'm "running" so much. I thought things had slowed down, so to speak.

Blood sugar was 145 this am, which is pretty good for me considering it's under 200 for a change.

Today will be a busy day for me. Support Group Meeting, eye glass pickup, and med's pickup. I'm quite sure something else will come along.

The GBS/CIDP support group meeting was interesting and informative. It was nice to see other people who have the same issues as I do. I’m sorry we have this disease, but it’s nice to know that I’m not alone. The next meeting is in March ’06.

It's 4.15 am and I'm up like clockwork. Big surprise huh? I went to bed at 1 am, so I've only had about 3 hours of sleep. I'm in some sort of "major nap mode" when it comes to sleeping or rather not sleeping at night.

It's 5.00 am I'm going back to bed and I'm going to just lay there until I go back to sleep. It's 8 am and I'm up for the day.

I noticed when I laid back down yesterday morning, it was about 8.00 am and I didn't sleep two hours and I was up for the entire day.

My legs are heavy this morning and my knees are bothering me. Still fighting this cold.

Dr. Garrett called to confirm the lab test results from my Kidneys. Oh Joy

Up @ 4.15 am but I went to bed at BEFORE 10.30 pm. No kidding! Lights out, TV off before 10.30. Haven't done that in a while.

Feel okay this morning, the cold is still with us. Will do another round of cold medications today.

My legs are still bothering me and I have PT today. Bummer. The way I feel right now, I'd rather stay home and take care of this cold before it gets out of hand. I've already got "the cough" I can't seem to shake.

I need to put some air in the front tires of my Escort, but the way my legs feel today, I'm not sure if I'm going to make driving that car.

I'd better set my alarm clock, because I know I'm going back to bed later this morning.

I went to bed about midnight and I'm up at 4.15am. Why? Who knows. Guess I'll do the laundry.

I'll stay up long enough to eat breakfast and take the dog out. I need to keep him on some sort of schedule. Actually, I don't know why I even bother.

My legs are hurting this morning.

Now I'm coming down with a cold. The last thing I need is to get sick.

Up at 6am Slept okay last night

I'm supposed to get my IVIG today.

Kaye from Rex treatment called me yesterday while I was out. I wonder what is going on. When we last spoke, everything was okay except for the fact that they were out of Polygam and I needed to get another brand of IVIG and take some kind of test to see if I was Iga deficient (whatever that means).

Okay, it turns out that I'm NOT allergic to Octagam after all. After all this time of being told that I was!

Kaye ran a small "test vial" of Octagam to see if I would tolerate it and I did. Now we are waiting to see about the Iga thing.

Happy Birthday Baby Bro!

Up at 5.15 am

Legs gave me problems all night, still heavy and knees hurt. Was hoping for better results today.

Blood sugar is too high this morning (411).

Will see Mental Health today and the Nephrologist (Kidney Doctor).

I'll go by the job and pick up my very overdue Service Award package.

Some GOOD news for a change! While Dr. Garrett (the Nephrologist) was doing his exam, he did a reflex exam on the inside of my elbows and they MOVED! I actually have reflexes again in my arms!!! First time since last December!!

I drove the 5 speed today.

Slept until 6.30 am this morning.

Having problems with my legs, they are very heavy and they hurt. I hope I'm not having another set back.

The "shakes" are still with us. I am so thankful for the GBS/CIDP website. Without it, I don't know where I'd be when trying to figure out what is going on with this disease. The discussion forum is a wealth of information for people like me.

6.19pm
Been resting most of the day.

My legs are still heavy and hurt, especially around the knees and it's getting harder for me to walk.

Up before 6am

Slept okay last night didn't have too many problems with going to the bathroom last night.

Took Mister to the Dog Park today. This is the second time we’ve been back in a very long time. I know he misses it, but what can I do?

Lunch time blood sugar dropped below 70! What gives with my blood sugar these days? Good thing I've got this pump. I'll learn how to use it next week.

For some reason, I started to nod out and needed a nap today. It may have been related to my blood sugars.

I haven't heard from Austin all week long. Interesting thing considering the fact he keeps telling me that he loves me.

Slept until 7.30 am!! WOW

Wonder if it was because I needed to take Bextra in the middle of the night because of the pain.
This is the latest I've slept in a very long time.

Legs are heavy this morning and knees hurt again.

I noticed I'm getting better at waling to the bathroom without lights on at night and not having balance issues.

The "shakes" (internal as well) are getting worse.

Up at 5.15 am.

As early as I'm getting up now (without an alarm clock), the day I need to go to work, I won't be able to get up at all.

Still having some problems with balance and control.

Still having problems with "shakes". Need to research GBS/CIDP site.

PT @ Wake Med today- worked out on the weight machines.

Drove my stick today!! First time in a LONG while.

Up at 4.15am and wide-awake. Maybe I'll go back to sleep after being online for awhile.

No such luck. I'm on my way to see Cheryl.

Walked Mister today, legs feel okay but knees hurt.

Mister licked my toes. I could actually feel the wetness and warmth on my toes, but not on my legs.

Once again up before 6am

Got up twice past midnight to go to bathroom.

Still able to lift leg to get into/onto bed. Making progress in leg strength.

Fasting blood sugars are back in the 300's.

Reduction in leg swelling seems to have stopped. If so, I'm in trouble. Edema is still very present.

Up at 5.45am.

Didn't get up much last night to go to the bathroom.

I was able to lift up my leg to get into/onto the new bed. Yea!!

Will see Mental Health today.

PT at Wake Med

Once again up before 6am.

Swelling in my legs is still going down, but feet remain swollen.

I can almost wear sneakers again.

I stood on my tip toes for a quick second!!

Austin is leaving today.

I actually walked Mister without my walker tonight.

Up early this morning.

Mister and I are going out this morning.

My legs seem to be getting better, the calves are better defined and I can walk around the house without my walker.

Austin is still here.

Going to Rex for IVIG today.

Kaye at the Cancer Center tells me that the supply of Polygam is out and that they need to find another brand for me.

Here we go again. The last time we switched brands, I broke out.

Up this am before 6am. Still waking up about every two hours to go to the bathroom.

Took Mister for a walk this morning. Legs felt good.

I had a phone appointment with Social Security today at 2.00pm. Nobody called.

The phone rang at 4.53pm. I answered it, and the person on the other end hung up.

Long day and I'm wiped out. Trying to stay up until 10pm to take Lantus.

Austin is here tonight.

I don't know what his issues are, but I feel that he can put them on hold until I get some sleep. Don't wake me up to talk, discuss, any topic with me in the middle of the night.

Once again up early. I'm up at 5.20 am. I stayed up all day w/o nap. I'm going to try and go to bed early, or I should say before midnight.

Didn't sleep well last night. Up and down most of the night. Finally up at 4.45am until about 10.30 - 11am.

PT at Wake today. First time in a long while. Not bad. Good thing I was exercising while I was in Baltimore.

Back on the Topamax- 25mg nightly, will increase each night until reach 100mg's.

Blood sugars are back up to 300's. What gives?

Meeting with Mental health today. We will have a lot to discuss, I've been out to town for 10 days.

Meeting with Dr. Schecter today. Need to ask her about getting IVIG at home or after hours, or on the weekends to deal with this issue from my job.

Meeting with the Kidney doctor today. Let’s see what's up with this.

Wow! I've been up all day without a nap.

Driving back to Raleigh today. I'll be driving back alone

Dad's family reunion is today.

Got up twice last night. Slept from 2am-6am without getting up at all. Yea!!

I'm at my max on the Edema dosage. The swelling in my legs continues to go down, but still not results in my feet.

Blood sugar is 389. Somewhat depressed/stressed last night - guess I'm still upset from my phone calls from yesterday.

Called Sonia today - I need to get some type of documentation regarding the company not being able to let me work part time and the reason why.

Got up twice last night - still slept better, didn't wake up until Virgie's alarm went off and didn't get up until 6am.

Blood sugar 288. Had the munchies last night.

Got a phone call from the company STD insurance company telling me I can't go back to work next Tuesday. Reason: "company can't accommodate 20 hr work week schedule".

According to Janice, the company has the right to keep me out on STD (and then LTD) until I can work a 40 hr work week schedule.

I don't understand this. My supervisor and I have already agreed on a 20hr schedule, the hours being from 9am - 1pm, Monday thru Friday.

Besides, the company has "accommodated" other people’s schedules in the past. I know this for a fact.

I'm the one who input the information into the records.

Slept better last night and didn't get up as much.

I actually used the pads and didn't get up except to change them and go back to sleep. No walking to and from the bathroom.

Legs are beginning to look better in the mornings. My feet are still extremely swollen.

We may go out today, but not sure where.

Mom, Dad and I went to Sam’s. I'm walking a little better despite the pain in my legs and knees.

Up at 4am after bathroom runs every 2hrs.

I'll doze/sleep later today as well. Dozed until about 6am. Blood Sugar 296.

Would like to get out today. Tired of being in the house. If nothing more than going to Wal-Mart.

Mother and I went to K-Mart and I had a good walk. It hurt because I hadn't walked in a while.

We left K-mart to get some Steakfish for lunch and I walked to the Superking, which is about a half a block from K-mart.

When we got back to Virgie's house, I managed to get up her back steps alone. I'm not able to actually bend or rather "step" up, but I manage by pulling my legs up as I pull on the rails with my arms.

Whatever works.

Went to bed at 10pm, up at 12.45am, up again at 2.00am, up again at 3.30am up again at 5.00am.

I'll be glad when I can sleep without having to get up and pee every two hours.

Hopefully this will happen when the Edema is gone.

Getting up at this rate, I'll spend most of the day resting, reading etc. Legs are heavy this morning, but not really painful.

Feeling dizzy, lightheaded. Feet are tingling - from toes to back of foot.

I did nothing but doze all day.

Up at 4.45am

Resting up for Kim and Sean's cookout today.

Went to cookout and had a very nice time.

Kim and Seans house is HUGE!! It is definitely a "work in progress", and something I would enjoy working on room by room.

My family is funny; they will use whatever is handy when they need to. Example, my walker has a basket on it, and you guessed it, it came in handy when "other" people needed to use it.

Still in Baltimore

Up at 5.00 am. Blood Sugar in 300's. Depressed last night sought comfort in chocolate.

Leg swelling seems to be going down somewhat. Between sleeping with my legs up and going to the bathroom all day and night, they aren't so tight around my knees this morning.

Stayed upstairs most of the day. Didn't go downstairs until around 5.30 pm. Came back upstairs about 10.15pm.

Resting up for the cookout tomorrow.

Feet have started to tingle, mostly around the toes.

Took Topamax and an Amitriptyln last night and was up at 5.30 am.

Started new Blood Pressure Med this morning. Peeing all day!! Hopefully the swelling in my legs will go down. This Edema really sucks!

Cheryl called me in Baltimore this morning - may have problems with Kidneys, I need to see a Kidney doctor. I forget the technical name for them. She also told me that I will be getting an insulin pump.

I'm having issues with these stairs.

Going to Baltimore today and I'm driving.

Drove up all the way! Legs do get heavy when driving a long distance. Mom and I needed to stop four times on the way up here.

By 8pm legs are extremely heavy and swollen & arms are feeling heavy as well. Maybe extra exhaustion from being up early today and the drive and then going to Nana's birthday party tonight as well.

Up at 1.15 am til about 3am

IVIG today.

I met a woman from Fayetteville named Janice who has CIDP. According to her, she's had CIDP for over 20 years and has been misdiagnosed all these years. Janice told me that one doctor told her that with all the medical problems she's had, it's a wonder that she's still alive.

Just goes to show that Medical technology has come along way in 20 years.

Up again about 2 something until about 3.30 - 4am. Once again, why can't I sleep?

No pain last night.

I truly think if I didn't have this swelling in my legs and feet I would be able to walk.

Finally!! I reached a Fasting Blood Sugar of 141! Yes!

Went to bed early last night and was up at 2am. Stayed up until about 4am. Why can't I sleep?

No dope last night and no leg pains. Woke up again between 6 - 7am.

I think my legs would feel a lot better if they were not so swollen.

Slight tightening in chest.

Backing off on the dope at night. Feeling shaky in the mornings for some reason and legs are feeling funny, like they are going to give at any minute.

Not getting much sleep lately.

Going to bed at midnight, waking up around 2am, back to sleep about 3am, then for some reason I'm back up at 4.45am.

Up most of the day, I may doze sometime during the day. I try to stay awake during the day and not nap so I'll sleep at night, but this doesn't always work.

Legs are really bothering me. They feel like they have 20lb weights on each of them.

Took Topamax and Amitriptyln last night and had not leg pains. Legs are shaky this morning, may need to use wheelchair today. In wheelchair today, legs are very heavy and painful.

Went to PT anyway. Didn't want to miss out on anything, wasn't able to do any type of standing exercises, but was able to work out on the tablemat by lying on my back.

Where there is a will etc..

Woke up about 2.30am because of intense pain. On scale of 1 - 10, I'm off the chart (damn 10 being the highest), I'm taking more Topamax and Amitriptyln, but it's taking a while for it to kick in.

Fell coming out of the bathroom and once again, not able to get up. Waited until daylight to call Mom & Dad.

In bed for remainder of the day. Only getting up to go to bathroom.

Called Nancy and Cheryl to give them updates regarding fall.

Typing / writing are doing okay. My arm doesn't hurt must with doing anything these days. I still have residual numbness in both hands and fingers.

My internal thermostat went crazy today. I had the AC turned off early and when I turned it back on, my nerves went bezerk! I got soo cold that my teeth started chattering so hard that I got a headache! What the hell is going on??

I'm back to taking Topamax and Amitriptyln at bedtime because of nighttime leg pains.

It's 3.45 am and I up because of the pain in my legs.

The numbness in my feet is easing up, but the pain from the swelling is still there.

There is tightness in my chest whenever I get up and move around. I need to check the side effects on this script Cheryl gave me for this Edema

Really having problems with this Edema thing. Legs and feet are painful and it's not from the CIDP. It's from the swelling, which makes it harder to walk.

Some sensations are returning!!

Mister licked the top of my foot and I felt the warmth and wetness! Yea

Well the ramp has been up for a little while now, and I'm slowly getting stronger. My doctor's appointments are not as often.

I think this is a good time for Mother to go home.

Had a follow up with Cheryl today. Needed to discuss the Edema and Blood Sugars and get the results from the Stress tests.

Good news - Mother stepped on my toe and I felt it! Never thought I'd be happy when someone stepped on my toes.

IVIG today.
Mother and I may go to Spring Lake later today. Will be nice to get away

Seeing Donna from Mental Health today.

PT @ Wake Med.

I've lost over 20 pounds since July 05, 2005 and I'm on Steroids! Most people gain weight.

Doctor's Notes:

Impression: Weight 236. Gait is stable with a walker, weaker on left leg, with hip flexion and dorisiflexion 4/5. Grip weak bilaterally, 14 kg on the left and 10-11 on the right, interossei 4/5. Full-strength eye closure, check puffing, deltoids.

CIDP continues to be fairly stable with a combination of high-dose Prednisone since early July, and IV Ig started in April. Continue 2x month as long as it is available, continue Prednisone. Ok return to work part-time with wheelchair, and ramp for home use. Follow-up one month.

Went for my Nuclear Stress Test today. This took most of the day.

No one expected the medication to set off the CIDP. My nerves went straight RAW! I was in so much pain. The guys in the office thought I was having a heart attack.

I was down for the remainder of the day.

Meeting with Mental Health today, then OT and PT

Legs are starting to swell up. Will need to have Dr. Schecter or Cheryl look at this.

Today is Mother's Family Reunion

Blood Sugar was a little high, but that was to be expected since I actually had an appetite today.

Today was a good day!
AMEN!!

Rode to Baltimore today.

Hard ride. Legs are cramped. Lesson learned - need to ride in front seat of car and have driver stop more often.

PT and OT today.

Need to drop Mister off at the vet. May be going out to town tomorrow.

Taste buds are shot. Everything tastes like wet cardboard.

Have OT and PT today

I'm at the point where I need to have someone here to live with me, so Mother is coming to stay with me for a while.

I'm meeting with Donna from Mental Health today. I'd never thought I'd be meeting with a professional. We as a people usually don't go this route. We have girlfriends, preachers, sista's, mommas, etc who we turn to with our problems and issues.

On the floor again.

It took Linda a good half and hour and two chairs to get me back up. Good thing I had my front door already unlocked when she came to get Mister.

I contacted a contractor to build a ramp for me. He came out, did the measurements and then told me he would call me later with an estimate.

He did - $3,700.00 for an ADA specific ramp. PLEASE!! I don't think so!!

My LEGS don't work right, not my mind!!

God Bless my neighbors!

Linda took me to Rex for my IVIG today and helped me back into the house. She is also helping out by walking Mister for me.

What is going on with my Blood Sugar today? It's 505! I need to call Cheryl ASAP! It's got to be something in the IVIG to cause this.

Well it turns out that I was right. The Polygam IVIG has a fair amount of Glucose in it. Cheryl has called the Pharmacy at Rex to find this out.

She is also going to call a few other people to find out what we need to do for my next dose of IVIG so it doesn't happen again. The woman is on the ball!

Happy Birthday Mother !

I can't get out of my own house because my legs don't work right. This totally sucks! I need to get a ramp and quick.

Things have gone from bad to worse. I’ve been having problems with going up steps lately, but this tonight my legs just plain gave out at the worst possible time.

I took Mister out for his last elimination and to my horror, I did not have enough strength in my legs to be able to lift them high enough to go up the steps to my house!

After much pulling on the rail of my steps and continuously trying to lift my legs, I finally needed to sit down for a while and rest. After a while I tried to get up. That was when I realized I also didn’t have the strength to get up from a sitting position. DAMN!

I tried to raise myself up and "butt" my way up the next step and into the house, but that didn’t work either. I have no strength anywhere. Not in my legs, nor my arms.

I REFUSE to cry.

After sitting outside for over an hour or two (in the heat and humidity, but it’s dark, so for this I’m glad) I hear my neighbor coming home and thankfully he hears my call for help, comes over and gets me up.

Don’t ever let anyone tell you that GOD doesn’t answer prayers. He certainly answered mine this night!

I have three doctor’s appointments today.

I’m riding up with Dad to RDU to meet LaShonda and Bri.

Okay, I’m beginning to understand what it’s going to be like to travel with a disability and this walker. I’m really going to have issues if I have to travel in a wheelchair. Well, maybe not, I guess it would depend on where I’m going and how I plan to get there.

I know from today’s experience with RDU security, I’m going to have to try to be a lot more patient with people.

Example: as I was going through security, they wanted me to take my shoes off. No problem. Now, if you see someone with a walker, be considerate and get her or him a chair BEFORE asking them to take their shoes off.

After the child (he was younger than I am) went and got me the chair, he asked me to remove my shoes. He was taken aback when I told him he was going to have to remove them himself because I was not able to because I couldn’t bend down.

Then he wasn’t happy when he needed to "wand" me and had to actually lift my legs. He was really put out when I told him he was going to have to get me out of the chair he put me in and the way it was going to get done was by me having to wrap my arms around his neck as I tried to stand.

I guess he figured RDU security didn’t pay him enough to get this "up close and personal" with the public.

All in all it was a good experience for me to go through. Now I know I can do it.

Going to Mom’s house this weekend. LaShonda and Bri are coming in from Arizona Saturday. Will be good to see them

Went to see Dr. Schecter today.

I feel mentally stronger than before. Having issues with my legs though.

As usual, some days are just better than others. Nancy has reduced the Prednisone from 60mg to 50mg (per day). It’s still high dose, but at least we are moving in the right direction of reducing the dosage.

Doctors Impression:
#1: CIDP appears to be responding to IVIg. She is definitely stronger than July 05th, it is too early for the high dose Prednisone to have kicked in.
#2: Abnormal EKG, for stress test in early August.
#3: One month edematous RUE. #4: Exacerbation of DM and HTN from steroids.

Cheryl did an EKG which came out abnormal (so what else is new) and referred me to Capital Heart Assoc for a follow-up.

It's somewhat distressing to have to tell a Medical Doctor WHAT your medical condition is. Somehow you expect them to know.

Physical Therapy at Wake Med today

My first meeting with Donna Hooper-Knox.

We already have issues. Her building is an old one and she is one the second floor and has no elevator. It took me a while to get up those steps.

We have agreed that I'm taking enough meds right now, and that we are going to "talk" about what is going on with me regarding my issues with CIDP and go from there.

I'll see Cheryl later today

It's hot!

I need to call Dad and ask him to watch Mister for me.

As much as I hate to do it, Mister is too much for me to handle right now. He can pull me off balance too easily.

Finally got my eyes checked. I guess Prednisone is good for something. Once I told the eye doctor I was on them, she redid my paperwork for the insurance. Stating something about the fact that I'm taking Prednisone would make it a Medical claim and that I would still be able to use my ABB Inc insurance at a later time.

And get this, she also knew about CIDP. It seems someone in her family has/had something very similar to it, so she was very careful in her examination of my eyes. She did tell me that with the Prednisone and the fact that I'm a diabetic, my eyes would get worse, then adjust.

We both agree that in the meantime, I may need to stop driving for a while.

Second day for IVIG

Today I'm on the 7th floor. This is where the just delivered moms are put. Needless to say, it was a noisy floor. But at least I had my own room with the standard TV and private bathroom.

IVIG today.

I'm not in the Day Treatment Center today. Today I'm in the Same Day Surgery part of Rex Hospital.

I’m So ready for my next IVIG. My legs are just not co-operating.

I don’t know where or why I’m so fatigued all of a sudden. It’s everything I can do just to get out of bed.

I need to buy a "booster" seat for the bathrooms because it's getting harder for me to get off the commode. I was frying fish and almost burned the house down because I couldn't get up in time.

And what the hell is going on with my eyes? Strobe lights, flashes, such pain. I’m past due to get my eyes checked. I'd better hurry up and do that before something else goes wrong. Damn!

Today was my first day on steroids.

My blood sugar skyrocketed to 353! What the hell?!

Cheryl (along with Dr. Schecter) wants me to start taking anti-depressants or at least begin to speak to someone about what is going on with me in regards to me being depressed. Personally, I think I should be depressed, at least just a little.

You don’t tell someone that they have a rare chronic disease and DON’T expect them to be just a little depressed and some point and time. But I did agree to see someone.

I’d rather see someone than take another pill.

Going out on Short-Term Disability.

Don’t like the idea, but it will make Sonia happy and will give me the time I need to get better and to give these medications a chance to work.

Dr. Schecter is changing the frequency of my IVIG from once a month to twice a month. She hopes that this along with the steroids will boost my immune system. Part of the issues with steroids is that there are so many side effects and issues with steroids. I’ve got more med’s to take because of these steroids.

Dr. Schecter has made an appointment for me with someone named Cheryl Proctor at my GP’s office to monitor my diabetes. Since I’m going to be on steroids for sometime, I’m going to need to start taking insulin.

This is something to look forward to. (Right)

Doctor's Notes

Impression: Progression of CIDP despite monthly IV Ig, with improvement after the first dose in April. Initially we were trying to avoid using high-dose IV Solu-Medrol because she has diabetes.

Plan: Increase IV Ig schedule, 0.5 gm/kg q.2 weeks. Add high dose Prednisone, 60mg daily, with calcium + D and Fosamax. Try adding Topamax 25mg h..s. for pain, it can also help with diabetes control and weight loss. Refer to primary care for help with diabetes and hypertension as we add steroids. Consider antidepressant for reactive depression due to medical problems and concerns about independence and ability to work. She understands that treatment does not guarantee improvement and is upset about the possibility of further loss of function. Follow-up two weeks.

In such pain last night and today.

There is no way I can make it to work, nor am I going to make it to my appointment next week I need to see Dr. Schecter TODAY.

Made it to Dr. Schecter’s office, she’s going to admit me to Rex tomorrow for IV steroid infusions. There is no way around it now, the IVIG alone is just not working.

Nancy also did another Nerve Conduction today. Results are below:

Summary/Interpretation: Compared with 04/14/05, the righ median, ulnar, peroneal and tibial moter responses are all a little slower in DL., fairly stable in CV, a little slower in CMAP amplitued, and F waves are still moderately slow. The right sural SNALP is now normal. The right medial SNAP is now absent. The right ulnar SNAP remain low amplitude and slow.

Impression: Mild worsening of slowing in motor nerves, with further disperioni of CMAP resulting in lower amplitudes, compared with 3 months ago. Some sensory nerves improved, others a little worse. Overall mild progression of CIDP, after several IVIG treatments. Clinical correlation recommended.

How much more am I going to have to endure?

Austin left too soon today.

My butt hit the kitchen floor as I was trying to pick up a bag of groceries off the floor and put them on the counter.

Since the food was in a plastic bag, it didn’t weigh 10 pounds, and I didn’t have the strength to pick it up without hitting the floor.

Worse yet, once I hit the floor, I didn’t have the strength to sit up, or get up. I ended up rolling to the couch and pulling myself up onto the couch. It took a half an hour for me to get from the kitchen to the couch.

Doctor's Notes

Impression: I agree with Dr. Glenn that the patient’s 4-5 month course of slow progression of primarily demyelinating sensory motor neuropathy, confirmed by EMG/NCS, is most consistent with CIDP. Lumbar puncture with CSF analysis is needed for the diagnosis. She has minimal motor involvement but is very uncomfortable from sensory involvement. As she has diabetes mellitus, obesity and hypertension, high dose steroids are probably a second line choice, although overall a little more effective than other immunotherapy. I recommend IV ig, should CSF prove consistent with the diagnosis (very high CSF protein with minimal WBC increase). I would give 2gm/kg in 3-4 days, then 0.5 gm/kg IV q.2 weeks x 3 months, then taper if possible. Discontinue Neurontin due to weight gain, although it probably has helped (she can now wiggle her toes comfortably), consider Trileptal.

Plan: The patient is interested in proceeding with LP. This is scheduled under fluoroscopy at Rex next week. She will taper Neurontin and start Trileptal, gradually increase up to 450 mg b.i.d. if needed, then check a level and sodium. Follow-up 2 weeks, she will probably have had her initial Iv ig.

I met Dr. Nancy Schecter in April of 2005. It was during our first office visit I could tell that I would enjoy working with this woman. Not only did she take the time to review the doctors notes I’d brought with me; she did another nerve conduction study right then and there in her office that same day! Floored me. One of the questions she asked was whether or not Dr. Susan Glenn did a Lumbar Puncture (Spinal Tap) before coming to a final conclusion of CIDP. I told her no, she did not. Dr. Schecter did state that Dr. Glenn was not incorrect in her decision to treat my CIDP with steroids, but given the fact that I am a diabetic, it would not be her first choice either.

The Lumbar Puncture (Spinal Tap) was done and diagnoses of CIDP confirmed. I was admitted to Rex Hospital for initial round of IVIG treatments. We found out that all IVIG is not created equal and that I’m allergic to a brand called Octagam.

By the time I saw a neurologist in March of 2005 (Dr. Susan Glenn), my range of motion was also being affected. I was no longer able to fully bend down, lift my legs, cross my legs. Nor could I fully lift my arms. My balance was off, (I walked like I was drunk all the time), I’d already fallen a few times, the numbness, tingling and pain had spread to my legs, arms, hands and fingers. The nighttime leg pains are the worst. On a scale of 1-10, they run anywhere from 7-10. And the fatigue was the worst. Despite all this, I was still working my full time job. I just found different ways to adapt and cope.

After a full neurological exam, I was sent for a Nerve Conduction Test (and a blood test which cost $1700, which my insurance didn’t want to pay for) to determine the extent of the nerve damage and to also determine a possible cause for the damage itself. The diagnosis was an autoimmune disorder by the name of Chronic Inflammatory Demyelinating Polyneuropathy or CIDP for short.

Dr. Glenn’s first course of treatment was to start me out on steroids. I was like "hello, did you miss the part of my medical file which stated I am a diabetic, and diabetes and steroids don’t mix?" Needless to say, I told her I was getting a second opinion

February 2005, I contacted an Endocrinologist (Dr. Tracy Black), who after a few tests determined that my diabetes was not the cause of the numbness, tingling and pain, but whatever it was, I needed to see a neurologist to solve it.

By January 2005, the numbness spread from a few toes to the rest of my feet and it became painful for me to walk, also during this time, the soles of my feet turned a lovely shade of purple.