Saturday, August 30, 2008

IVIG infusion complete! Home again, home again, jiggedy jig!

I'm late, I'm late, I'm late for a very important date! That's a date with all of you. Hello, I missed you so last week.

It appears to have been a good treatment this time. I will tell you all about it later. I'm trying to help get unpacked, and all that good stuff after being gone for five days, but wanted to check in to say hello. I'm glad to be back amongst you all without the sound of the wheels on the blood pressure machine going clickity-clack coming down the hall for the hourly blood pressure checks (every 15 minutes the first hour) for the duration of each daily infusion. Oh, and ugh, having to be weighed as soon as I checked in each morning so that the pharmacist could get my mix of my pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors), the IVIG's effects lasting a good two weeks, then beginning to wane during the third week, making me happy to go back again all over again. I've got lots to tell, and I guess the best part of this out-patient business is only having to be at the hospital for the time of the infusion, then 'go home' or wherever, whatever home may be, which for us is the hotel-like room in the Annex building of the hospital, that being the old hospital. It is very, very nice. We already have our same room reserved for next month.

I am already seeing God's hand at work in my life throughout this experience, almost slamming the door as we were going one direction, and at the time, only He knowing what was in store for me a few months down the road, and what it is being like for me so far. Once again I am having to put all my Faith and Trust in Him, allowing Him to lead the way.
Last week was so, so special, and I am anxious to finish up here, and get on with what I need to do, so I can come back here and tell you all about it. This is a bit of a hint of part of the fun part of the week:

Saturday, August 23, 2008

Coleman in the Big Apple!

Coleman and Team Larson, Scott, Peggy, and Caden, are in New York City now, living at the Ronald McDonald House. Walking about outside, they are seeing all the sights streaching as far as their feet will sustain them. They are soaking in as much fun as they can on their days' off from doctors' appointments, MRIs, and any other testing that might be drifting in and out his way however the case may be as it was last Thursday. They had a totally free day before facing his spinal MRI coming up on Friday. Wednesday he had had his brain MRI.

Quoting Peggy, "I got a call from our very nice doctor today that Cman’s brain MRI he had yesterday came back “stable”. ‘Mr. Spot’ is still there, but unchanged. His words were, “is it treated disease that is unchanged? Is it scar tissue? We really don’t know at this point, but either way, it’s good news that it hasn’t changed since December. Now we will wait to see what the spinal MRI shows us Friday (tomorrow).” We’re decided it was reason for celebration, and Praise, SO- here’s a little of Team Larson’s day in NYC-"

They used their free day of Thursday to get out of RMD to explore the area around them, and found many things of interest to the boys, and food which pleased all four of them, including a hot dog stand on a corner. Immediately, the first thing I thought about was Lenny on Law & Order, and all the hot dogs they appear to have eaten during that show, one of my favorites, and one of my favorite actors whom I really do miss.

I had been making a small video for his place on my sidebar, but just as I was about to complete it, my cursor accidentally hit the close button, and, yuck! my work was all gone! It said it was saving every ten minutes, but I could not get to where it was saved. So, until I can get back to it, either tonight or in the morning (Sunday), I'm putting in a few pictures of him in the Big Apple.

I cannot think of much more to say right now without Peggy's update open before me, so I will close, and add a picture or two here to make-do until I get back here which might in a few hours, or tomorrow. All depends. Sunday is our day to go to Jonesboro to the infusion clinic for my IVIG, so I'll just have to see how things roll along.


"Now for the flight- it was the first time flying for both boys and they were “ner-bus”. Caden was actually the one scared and wanted his window pulled down after we got in the air. Coleman really enjoyed looking out- then took a nap for most of the flight. They each had a window seat right over the wing."

"We had a friend (thank you Reed!) drive us to Kansas City Sunday night and we stayed the night to fly out Monday. Caden took full advantage of the pool at the motel- he loved the hottub. Coleman fell asleep fairly early Sun night, but stuck his feet in a little on Monday morning before our flight."

"Then we walked to a park not far away from the RMD house, called St. Catherine Park. Now that the boys know it’s there, I’m sure it’s going to be a place we frequent as often as possible. It was a beautiful day here."

"They had two baby elephant statues that sprayed a mist of water, but those of you who know Caden Dale, know how wet he can get with just a mist! I wish I would have gotten some pics of what he looked like by the time we left- he was wringing wet! Coleman got his hands a little wet and immediately thought we needed to go back to the house so he could change his clothes! I told him he could dry them on my shirt because he sure wasn’t about to dry them on his own. Boy, are they different as night and day!"

"They also had a sand area that the boys both LOVED!"

"The boys actually got their first mail today. Our carepage angels continue to amaze us. We thank you from the bottom of our hearts.

Here is our address in New York. I will try to post it in the ABOUT PATIENT you can click on too, so you don’t have to dig back."

Coleman and Caden Larson
c/o Ronald McDonald House
Rm# 1102
405 East 73rd St.
New York, NY 10021

Now for a cute story that I *must* totally quote Peggy on: "After naptime, we headed down to the terrace for another catered meal…yes, we’ve been doing a LOT of eating! Good thing we’re doing all that walking to even it all out! Coleman was determined he was going to get a piece of pizza from his favorite place, (Famiglios) I told you he’s a creature of habit…Daddy promised him, so “a promise is a promise” Coleman says. After the rest of us ate, we made the trek to Famiglios, and headed in to get Cman his piece of pie. (it doesn’t sound like this franchise is only in New York, but they have them across the country, nonetheless Coleman has decided this is going to be his ‘constant’ here I guess) The guys behind the counter are getting to know us now. They said they didn’t remember Scott, but remembered Coleman- and after doing some spinning tricks for the boys, gave Coleman’s his slice tonight ‘on the house’! No charge. How nice was THAT? I’m sure they will be getting plenty business from us in the future…you know, until Coleman suddenly moves on to something new! For now, it’s FAMIGLIOS CHEESE PIZZA!"

"Caden didn’t want any pizza, (he ate well at the catered dinner) but decided he wasn’t going to be left out and requested an ice cream treat on the way back. So today was all about food and the park…"

"Please know that we don’t need anything- really. We’ll have limited space to pack things to bring home anyway…but we always appreciate your stories and always enjoy hearing how Cman's story has brought kindness to OTHERS and made a difference in their lives!!!"

Their colors are green and yellow, hence the green text for this. Please, the way the boys love getting cards, and being in a strange - is any place strange to them, except there are NO corn fields as they look out their window - would you take the time to send the boys a card or two? And, more importantly than that, please continue to pray for Coleman as the doctors try to uncover the mystery of "Mr. Spot" in his little brain that is stubbornly remaining behind following his stem cell implant earlier in the year. Pray for strength for Scott and Peggy as they follow this trail to unearth exactly where Mr. Spot comes from, and what they can to do send him on his way.

Coleman and Caden are household words here, especially as we wait to hear test results, and about the family in general. Of course, we have never met this child, nor his family, yet they have implanted themselves within my heart, and other children with cancer. September is Childhood Cancer Month, so for this month, place a little special emphasis on our babies, toddlers, pre-schoolers, and on up to our teenagers (AJ) stricken down with these killer diseases of childhood cancer.

More on everything later, hopefully while I am in Jonesboro receiving my treatment. And, while I am there, I will edit this and try to add tags.

Till later.......

Friday, August 22, 2008

Using tags and digital graphics

I have not been using tags simply because I have a really hard time deciding on what to use. It seems like I tend to use too few or too many, so I just quit altogether. Now, however, going back over some of my own posts, and having a hard time finding what I'm looking for, I think it is time for me to start trying, which I did in the post just prior to this one. I guess if one is too err, it would be better to err on the side of using too many, so I guess this is a warning, from now on, I'm going to start using tags, good, bad, or whatever! It is all part of the learning curve while I am learning even more about blogging, as I go slipping right out of this bed! Kerplunk!!

Here is some digital graphic work I did on a picture of Callie in *my* chair that she thinks is hers, but Anna Kay has been taking it over recently. Be sure to click on these to see the larger sizes for a better look-see of these thumbnails.

This is the original, untouched except for resizing.

This is after using some digital graphic design, which included some Illumination Effects to simulate the sunshine that was not there at the time.

Too harsh, I used some more graphic design works to obtain the appearance I desired, then created a frame using several various sized borders, textures, and 3-D effects, hoping I was giving Callie that closed-in feeling of being in a box that she dearly loves! (Does your cat love boxes and sacks, too?) I don't know about you, but the frame just makes it a little bit cozier for her with the sun (producing warmth) and frame (giving her a good, secure feeling), but then again,maybe you just have to know Callie to get this feeling.

Well, let's just say to Callie,
"TOODLES and we're
Striving for a world without Myasthenia Gravis!"

I hate being in this bed!

It is miserable being in this bed where I cannot move around! It is not the bed's fault, except for being such a soft mattress causing me to sink down, and I do not have the legs and arms to push myself upward, and I just keep siding downward. Mine is an air mattress, pumping air throughout every five minutes, but I swear, I do not feel the air moving through it as it used to do. It is supposed to be good for preventing bed sores, but I don't know, I just don't know. I'm also not supposed to be lying on my back, either, and that is where I keep ending up, and whenever I put my hand down to get up, it just sinks down. Again, not firm like it used to be. I must be doing something wrong. Whatever it is, I've got to figure it out, because I literally cannot move around in my bed. How can that be good for me? I dunno.

Jim has been scanning old pictures, and I think they might look pretty good amongst all these new babies. Be on the lookout!

In the meantime, here is Alexander making things bright and cheerful.
He's a beauty isn't he?
This is using digital graphics on a cell phone picture.

Striving for a world without Myasthenia Gravis

Wednesday, August 20, 2008

Playing hormone turnover, how many and for how long?

Note: Not finished until Thursday the 21st.

Do you remember the phrase, "Fruit basket turnover?" At least that is the way I think it goes, the way it has been said colloquially, and that is definitely how it is going in my life right now. Oh, myyyyy! If I remember correctly, starting with the prednisone was the first thing that got my hormones mad. Yeah, that is the way if felt. They were mad, and were taking it out on me, and I had nothing to control them. Wheeee! They were just free to be, free to be as they please!

Then they put me on estrace for the caruncle. Oh. my. gosh. I haven't had any estrogen in years, and now I am *applying* it every day for a couple of weeks. Cry. Almost non-stop, I have been crying. We live on the banks of the Mississippi with a good levee between our town and the river. They have it wrong. We need flood control on THIS side of the river for flood control from my tears. Can we afford enough Puffs? The way I'm going through them they may need to put on some extra help at the factory where they make them.

There have been a couple or so other things but for the life of me, maybe more literally than you want to know about, I cannot remember what they were, oh, yes, ran out of my anti-anxiety medication, but here's the stress running side by side along with the hormone fiasco: today, an appointment with the endocrinologist's nurse practitioner for a follow-up visit, tomorrow, lithotripsy of left kidney, Sunday, go to Jonesboro for IVIG treatment all next week.

What actually has happened, and *may* be happening: today, had to cancel Latiff's nurse practitioner's appointment due to the severe headaches from last night and into this morning. Tomorrow, Friday, lithotripsy is a *maybe* depending how I am doing. Sunday is a sure deal. I am needing the IVIG in the worst sort of way!!

The lithotripsy people called and wanted to know if I could be there at 5:00 a.m. tomorrow! You have GOT to be kidding! We would have to leave here at 3:00 o'clock to get there at that time. That is the middle of the night! Sure, I'm awake most nights at that time, but to l e a v e here at that time, gosh, oh, I just can't think about what it would be like.

About getting the lithotripsy done tomorrow. We have talked about it, and feel that going through it probably very late tomorrow to accomodate Gubin's schedule (Jim's surgery was changed twice for that reason), home on Saturday, then going to Jonesboro Sunday to start the IVIG first thing Monday morning, that is just too much for me, especially the way I have been feeling this week. The lith people already know I may not be there, and it's okay with them, if I am there or not, so I am pretty sure I am not going to get it done tomorrow for MY own good, and not theirs. After all, how long have I already been living with these stones inside of me anyway? They were there at my last appointment, and it was not a big enough issue to have it done any time soon, so why put me through a rush now? I'm not aware of any of my pain or anything else they are causing, so no need to rush now. At this point I am almost positive there will be no lith tomorrow, rather Friday and Saturday will be "get ready for Jonesboro" time, meaning to be as rested as can be when I start that drip Monday morning. There. I think that is settled.

Maxalt. I have started using Maxalt to treat these headaches which reached mamoth sizes these past 24 hours or so, maybe a little more, but really bad during the night last night. I'm pretty sure it helped this morning, and I am trying it again now, along with a percocet. Let's hope it works and I don't need a lolly.

Well, these are just a few ways I've been messing with my body, teasing it, tosing it around, and my body evidently doesn't like it, and it has been crying about it all. It sure doesn't take much for the tears to flow, that's for sure. I have to remember to check on getting some more Puffs tomorrow (Friday) because I doubt I have done anything to staunch the flow of tears. We'll see. I'm trying.

Off now to publish this, and get on with other things just begging me to do. I really have been accomplishing a lot more things lately, making me feel better. I'll clue you in on some of them a little later on when they are done.

Striving for a world without Myasthenia Gravis

Monday, August 18, 2008

Bumps in the road, the Road to Remission

I can tell already that coming down on the prednisone is going to be a bumpy road. I have been on it for at least ten years, with about 30 mg per day being my high dosage I would go to, and never lower than 15 mg, usually 20 mg being the lowest I could go when the symptoms would emerge again, but between 15 mg and 20 mg being the juggling arena, vying for the point at which I could tolerate it, at that particular dosing level before settling on the best, desired, most effective dose.

Early on, we did not know precisely what we were dealing with in treating me, only that it was another autoimmune problem to add to the others, therefore did not know I was needing the prednisone precisely for the Myasthenia Gravis, and we would stop it whenever the symptoms improved, trying to spare me the prednisone side effects, when in actuality, what I was needing was to remain on it. The prednisone side effects had already crept upon me, though; it was too late to forestall that. The diabetes with diabetic complications were already upon me in no less than the form of severe peripheral and autonomic neuropathy. This was in the late '90s and early 2000s, bursting between 2000 to 2002 when the diabetes showed up unexpectedly.

When my diagnosis by Dr. Connie Smith, ophthalmologist, was confirmed with the ptosis, Dr. Franklin already had me on the correct dosage for MG. With the addition of the Mestinon, I was able to see some improvements in some areas (with even the lowest dosage, I excitedly told my neurologist, Dr. Saeed that I could write for the first time in several years; Ashley had been writing checks and signing my name for me, though my eyesight was still impaired - I went into an appointment with him with my eyes taped open to show him how I had to do it to be able to see, especially to see to read), until February '07 when I had a viral infection and experienced an MG crisis. However, not being really knowledgeable of MG, my focus was more on the diabetes, and my continued diabetic lows, one life-threatening, rather than the total weakness brought on by the MG, with the severe swallowing and breathing problems where I was able to only get down sips at a time.

It was in May after this, that the IVIGs were started, and here we are, ever since then, some 16 months later. Next Sunday, the 24th, I will go back to Jonesboro to the infusion center for my second round of infusions there. I have ambivalent feelings still, about that. I guess I can relate it to the times we changed stations when Jim was in the Air Force. A part of me would be excited, ready to try out the new and different, but there was that part of me that wanted to stay where I was. It had that "comfortable as an old shoe" feeling. Wonder if I was beginning to look like one, too. That would have been a horrible thing, being the shoe freak that I am!

I've rambled on over these few stones in the road. Think it helps sometimes to look at where I have come from, and where I am - most days - now. Sometimes I wonder if I am as far along as I think I am for what I try to do. I have myself in a mess right now around my area because I started getting it a bit more liveable for me, a bit more doable, workable. . . should I say a bit more like normal? That is what I want. Just to move my legs around because they are the basis for so much movement, no matter how small. Just to move upwards in the bed is a major undertaking without the legs to power the rest of the body. Sometimes I have to ask Jim to help me move my booty, lift my booty upward in the bed. Well, phooey!! Not a time to lament! At least I am trying not to, anyway. It gets hard sometimes, and I hate these med-change-tears, so today I need to try hard to do what I can do about it. What I can't, well . . . well, let's just go for now, not even the whole day because with MG your day can change within the hour.

I'll see you tomorrow. I think I feel like taking the day off, so you go and take some play time for yourself, too. Ha! Well, you take it whether I do or not if that is what you are wanting to do. But, if you do not hear from me, do not worry for I'm trying to have some play, have fun time.

Baubles, bangles, and beads . . . a little eye shadow, and lipstick, too, it just makes it you, Kaitlyn Nicole! What a snazzy two year old! Wish I could play with you! Thank you, Jennifer, for sending a couple of great-grandparents this picture of the Princess!

Striving for a world without Myasthenia Gravis

Sunday, August 17, 2008

Down with Prednisone

I am coming up on one week of reducing the prednisone from 60 mg per day to 40 mg per day. The major changes I have noticed are more problems with my asthma, and emotional swings without reason. What I was expecting, more intense pain, I have not seen significantly, and for that I am glad. The emotional swings are the hardest to deal with because they are hardest to deal with, and I do not know how to deal with them. Is this something I will have to deal with the whole time I am coming off the prednisone? It may be something I need to talk to Dr. Franklin about. Hmmm, maybe today because all it may require is just a change in one of my medications.

'Nough said on that for now. I'll see how today moves along, and make note of it. I want to go down on the prednisone, but I don't want it to throw my whole life out of kilter while doing it.

Striving for a world without Myasthenia Gravis

Friday, August 15, 2008

I have a friend, his name is Coleman

Round and round, turning upside down! Well, that is what I said didn't I? That's about how it was for a few days! Then Friday. No red Ford Expedition heading down I-55 from Blytheville to Memphis.

Actually, that was a good experience last week because it gave me a really good picture of how things are with me right now. Let's have a look 'n see. I had two doctors' appointments this week, the first one with Schnapp, the pain specialist, the second one with Gubin, the urologist on Thursday. Both were bland appointments, doing no more than maintaining the status quo with my pain meds, and then Gubin said I had everything I needed from his nurse, and really hadn't needed to come in. NOW you tell us! Phooey! I really didn't need to hear him tell me I had to continue using that estrace cream, probably for two or three weeks, and if that doesn't work on the urethral caruncle then surgical intervention would be needed.

What I gleaned from it all is that I have held up remarkably well these weeks following the last IVIG, the first one received at the infusion center at St. Bernard's Hospital in Jonesboro. I had some pretty strong headaches, but I don't think they lasted quite as long as they usually have been lasting. For instance, right now, I am doing much better after these two trips to Memphis in a week than I usually do, not being nearly as sleepy. Better mobility. Handling conversations better, and enjoying them!! What is connected with what, I do not know because the IVIG is good for several autoimmune diseases that I also have, and it *could* be having a positive effect on one or more of them. That would be nice. Putting it all down, it sounds like more, and better overall strength, and it also seems like physical and mental. I had a good idea, imagination for this post, but did not have the time to pull it from the depths of that forgotten area of my brain, to put it altogether for animation. At a later time; I'm enthused by it now, and will apply it as soon as I can put it all together. That's the way it is with me. I get an idea, and I'm not satisfied until I have it together and running.

Okay, I want to introduce you to a friend of mine. His name is Coleman Larson. I have never met him. He is just a little guy with a twin brother named Caden. When he was 2½ Coleman had a tumor the size of a tangerine embedded in his cerebellum. It was removed and the word MEDULLOBLASTOMA became a regular part of Peggy and Scott Larson's vocabulary. I would love to put Peggy's words here, but I failed to get her permission to do just that, so must wait until I hear from her, and I do not know how long that will be now that they are in New York City. In the meantime, you can go ahead and read his profile here at CarePages About Coleman Larson .

Peggy writes, "Caden has been the medicine no doctor could prescribe. . . Cancer has changed us, we appreciate the small things in life and cherish the friendships we've made. We live each day to the fullest and don't sweat the small things we once did. Coleman has taught us all that ATTITUDE and FAITH can make a big difference in how you choose to deal with cancer. HE has taught us the true meaning of determination. Cancer takes away so much, but it can't take away the amazing spirit Coleman has displayed each and every chapter of his journey.

Coleman says, "some day I won't need NO more meds or pokes, wight mommy? THEN I tan be NO-MAL!" Amen to that, but I don't think this kid will ever be described as NORMAL, he's way too special for that! He and Caden are now 4yrs old, and will start preschool in the fall."

Go meet Coleman over at the CarePages. Peggy could sure use a "Hello, I'm thinking about you, praying for you," right about now as they embark on this treatment at Sloan Kettering in New York City. It was hard for her and Scott to make the decision for this particular treatment She's a remarkable young mother (young to me :-) with all she has, and is still going through, as cancer has made its way back, once again into Coleman's little body - his head and spine. Mother and son keep on going, and you will find strength for yourself as you read her updates from the beginning, as she faces one challenge after another.

Brothers, they are for one another

Striving for a world without Myasthenia Gravis

Thursday, August 14, 2008

Round and round

Round and round, up and down. Today it's back to the urologist, to learn more about the urethral caruncle, infection, and kidney stones. The lithotripsies are already scheduled for the 22nd and September 5th, just before and just after my next IVIG treatment.

This is how I feel my life has been lately, taking a NASA photo of hurricane Dan, and adding a few extra twirls and twists! Looks like a sunny day today, so maybe I can throw some sunshine sparkles in to bounce around it.

I'll be back later this afternoon, or evening, or as soon as I can swing it. See you then. Grab you a sparkle of sunshine for your day, then take it for a whirl!

Striving for a world without Myasthenia Gravis

Monday, August 11, 2008

*My* Myasthenia, and what else for the Ragdoll?

FYI: This article contains medical information, with descriptions and illustrations that some may not be comfortable viewing or reading, but I have kept it to as near a minimum as is possible.

I have bounced you and me around so much these past two weeks, now I want to try to gently bring us together, whether we understand all that is going on or not. Ready?

Basically, I think telling about my first day going to the infusion center pretty much covered everything involved with that. Maybe, maybe not, though. I was scared beyond measure to increase my infusion rate, but like everything else, I believe God is in control, and I believe He was looking out for me that day, well each day, keeping me safe and comfortable. With Him in control, there are a few things I am considering, so hang on.

We finished up that week then had appointments for the week following, first with Gubin's nurse on Monday, and then with Franklin, my Primary Care Physician (PCP) on Wednesday. Well now, that about Gubin was not with him, but for a nurodynamic test to determine the cause of my total incontinence. He had tested me several years ago, and told me it was due to my diabetes, so what's the story now, except that it has become much, much worse, and driving me insane with the uncontrollable urination! He told me back then that he was afraid take any surgical measures because of my MG, and for me to do anything I could to cope with it. At one time, he had me trying self catherization, but there was *some reason* it was more than usually hard to do (the caruncle was blocking insertion?), plus the attempt was so painful. Couldn't keep trying to do that. There is only so much of that you can try to do. Therefore, I managed with the disposable products, and did fairly well, until umm about a year ago, then WHAM!! No help whatsoever, and I planned to seek Gubin's help again once Jim had his clean bill of health. I've had a couple of anesthesias and tolerated them well (one being the implant of my port), so am willing from my end to possibly attempt whatever Dr. David may need to try. Call it desperation.

Plus, I have tremendous confidence in Dr. David Gubin. I had used him with confidence with those multiple stones equaling to six lithotripsies to avoid any surgical procedures on me, one of the stones was large and very stubborn.

Jim then used him with his prostate cancer surgery, using the Da Vinci robot.. Actually. he used it twice.
The first time Gubin encountered a twisted, fatty mass (an arm shown clamping the fatty mass.), and he had to curtail the operation in a conservative measure to prevent any spread of possible infection to other parts of his body. Following the subsequent surgery a few weeks later, he gave Jim explicit instructions, and told him if he would follow them he would be back to normal very soon. He was, and is feeling really good today. Good team work.

So, now it was back to my turn to check in with him because things were not going well with me at all. This test was the first thing he wanted done. He said he could go no further without knowing where the problem lay. Okay. I say I had the test done earlier, but he doesn't remember (records?), plus he was so pleased with Jim's
Cancer Free results, that I think he was just a bit cocky that day we saw him (happy?). Hey! Coming up Cancer Free can warrant anyone a bit of cockiness for a few moments. Gubin is a doctor with a very serious attitude, and can come across initially as all business, when in fact, he IS putting all of his attention on you and your case. I appreciated that in him. I really am looking for that seriousness in him Thursday as he and I discuss what will be done with my thrombosed urethral caruncle. I want to be well prepared. They are treating it with an estrogen cream, 4gm daily, and his nurse said she would send something for the bladder spasms which cause an increase in the pain, bleeding, and urination. I will be SO glad to get all of that started and see how much affect it has on some of the pain, and will allow me freedom from conventional pain medicine. The word *thrombosed* has been used here, but another word used that might also be understood in engorged. Applying pressure on the caruncle from outside the bladder causes a flow of bleeding with urination around it, and much discomfort to put it mildly, or plainly, causes a lot of pain!! All I can say is I am glad the estrogen only has to be inserted once a day!

Additionally, part of the tests last Monday was an abdominal CT done in his office at the same time to coordinate with all the other tests. All of this showed a couple of rocky kidneys! Now, how many in each kidney, I do not know. The last time, it was four between the two. I'll find out Thursday, and when the first lithotripsy will be scheduled. Aaaaargh, what a nuisance!! So, that is what my appointment was for last Tuesday, one week ago today.Thursday, I see him for explanations and scheduling appointments.

Wednesday, it was back to Memphis, this time to my PCP. I was looking forward to this one, to Arthur Franklin. We had soooo much to tell him
to bring him up to date. Then it came down to serious talking time. He asked me if I could have just one thing back, what would it be. It did not take long for me to come up with my answer, and that was, "my legs." It is my legs (and arms, which are involved with that) that prevent me from doing most anything. All I can do is enclosed within my arms' reach without any help from the rest of my body, especially from my waist down. I cannot even lift my feet an inch off the floor whenever sitting in a chair as in Dr. Cauli's office that day, and they may as well have been cast in stone. Or, as I've heard all my life, heavy as lead. I'm not a fine connoisseur of lead, but I guess it must be pretty heavy.

My answer led him to take the step I have been waiting for so long. I call it the Big P. Ashley calls it my Pregnant Pills. Actually, it is my prednisone! Drop it! Down, down, down, down! Dropping it by 20mg per day, down to 40mg daily until I see my MG neuro in September. That has been five days ago. How has it affected me? The pain is more pronounced. Harder to manage. I do not know if it is the cause, but my eyesight has been worse yesterday (what time I was awake) and today, but I think I've gotten it under control a bit better today than it was yesterday. I *did* take 15mg of mestinon a couple of times yesterday and today, whereas I have not been having to take much of it at all since going on this new regimen. It is so hard to judge since I have this kidney infection, and that affects my MG tremendously, just as it does with the diabetes. Oh, yes, my skin is much, much more sensitive to touch. It hurts for my legs to touch each other, and between pain meds, it hurts for the cover to lay across my body. This is not new, but the depth of the pain definitely is worse. I'll just keep an eye on things. On a positive note, it should help my hard to control diabetes.

I hope I have included everything. If not, this is enough reading for now, right? Right!

Tomorrow. Another favorite of mine for almost twenty years now. Schnapp! Off to Memphis we go again.

For an upbeat closure, to me at least, and I hope you like it, too. My trip to the beauty shop Saturday!

Striving for a world without Myasthenia Gravis

Saturday, August 9, 2008

Yesterday, I cried

It sits there, cold and lonely, no invitation beckoning me.
Sadly, my days are over, for that's the way it is for me.
A tear drops, as I remember the sounds we made together, you and me.
If I could, could I just try those ivories one more time?
Please, just one more time because
Yesterday I cried.
I cried for my piano.

©Ragdoll Billie

Striving for a world without Myasthenia Gravis

Thursday, August 7, 2008

Stealthily it crept. No one knowing it was there, much less that it was creeping around me. The day really was a good one, and I had so much to write about, lots to explain from recent doctors' appointments and exams, but suddenly I woke. It was Friday night, I found they were all gone. Gone? Who? Who was gone? And gone where might you ask? Well, I'm not rightly sure. I spent some time reading at BlogHer. That was interesting. Interesting enough to entice them (who is them?) here? I know that I checked out Manic and Dawn, but do not recall any others, not Kennedy, not last night, anyway, nor any others listed amongst my favorites. I used to get hung up at stages such as this, but I am leaning to just let it go, and not waste time trying to figure it out. I'm better, but not cured! hahaha That is something I can make a choice about whenever it arises, and choose to not allow it to let me down. Supposedly, it should get easier and easier. We'll see, won't we? It is already working to some degree, but then, this is not the time to test this threom. Aha. Score one!

So, what has been going on? What have we done? What? Who? When? Where? Well, when I get back from getting my hair done. . . . now that's washed, cut, colored, dried, and styled, I will be so delighted and sat down here and get right to it!+

Striving for a world without Myasthenia Gravis

Wednesday, August 6, 2008

If life gets more exciting!

Oh, my, I spent three hours in with the urologist office yesterday to have a horrible test, and a CT done, and now I am back to Memphis for an appointment with my Primary Care Physician (PCP). Just for information, a trip to most of my doctors is about two hours one way, but it may as well be all day because it seems to envelope the whole time from waking till leaving. Why does it feel like you cannot do anything while waiting for the time to leave creeps upon you, and then all of a sudden it is time to get up, dressed, and hurriedly gone. Hurry, hurry, hurry, hurry we're gonna be late! Hopefully, we'll be back in time to fill you in on yesterday. Got a new diagnosis! Weeeee!!!! Aren't you just thrilled beyond belief! Well, to tell the truth, I really was glad to get a diagnosis since I was having a lot of bleeding, and I am glad to know what was/is going on. No one likes to have red flowing and not knowing why, nor from where exactly. If what was found yesterday is all that it is, things are not so bad, so let us pray. I will see the urologist next week. Tests are being run during this interval time. So, today we go to bring my PCP up-to-date of the change in neurologist, changing to the infusion status, and now this new diagnosis. To make life so very exciting, I'll see if I can find something while we are gone this afternoon! Nah. Better not. Too many really bad things do happen on the road around here. Let's just wish everyone a safe and happy Wednesday afternoon, and..................................................

Striving for a world without Myasthenia Gravis

Monday, August 4, 2008

And a good time was had by all!

Changes. Not easy for sure, but without them how would we ever learn? We even change grades in school because of changes we make during the school year. I left off here one week ago one very nervous person due to changes taking place in my life of *My Myasthenia*, and somewhat scared of going from one facility and type of treatment to another, from inpatient to out patient, from one that is 24/7, to one that closes shop at 8:00 p.m. BIG DEAL you say. For me it was a big deal. How was I going to get all of that IVIG done in twelve hours, be done with that 1000 ml by 8:00 p.m. at the slow drip I needed? Inpatient, no problem, just let it run until finished. Outpatient, therein lay the problem. They turn out the lights and go home, finished or not. Never have I been finished in twelve hours, and running it at 80 ml caused the really bad headaches. What to do? What would happen? Let's back up to one week ago and see.

For one thing, the trip is much better. Jonesboro is a nice little jaunt for us, a nice hour's Saturday or Sunday afternoon drive, a stroll through Turtlecreek Mall, Barnes & Noble, and with a Starbucks for the drive home. We got an Arby's about 6:30 p.m. on our way to the Annex building where we would stay in rooms provided at a low cost for those needing to stay overnight as we did. It was not feasible for us to drive back and forth every night. Getting over to the hospital was hard enough, much less driving for an hour on top of that . . . ugh!! It *does* take me a while to get this body up and at 'em each day. I try, though, I really do try.

Jim went inside to register, and then came to get me. The room was typical of any hotel room, though a refurbished part of the hospital. The only thing missing was internet connection. No problem. They had a telephone, right? I would just set up an aol dial-up account, and go from there, taking turns as needed. Worked at St. Francis, right? We were tired, and facing a new day, To bed.

Monday morning. Easy enough. Once we pass through the door on floor two where we were we hit the main hospital, we immediately hit the hussle and bussle of hospital life. We follow the yellow brick road the visitor elevators signs, and thanks to Jim's nosing things out earlier, we find the One Day Surgery where the Infusion Center is located. After Jim deals with them at the window, exchanging information, they come around and wrap my arm with a cute little paper bracelet, and we go across the hall to weigh, something we have to do every morning before they send the request to the lab for the IVIG, something new and different. Then a sweet little volunteer takes us down the hall to room 21, where she gives me instructions that I must remove everything, and the nurse will be in soon to take care of things. Everything? Everything. Not said, but everything for an infusion? Evidently. Also, not said, well, okay, if you say so. I comply, and get upon the bed in hospital attire. The nurse comes in, and the first thing she says is, "Oh, there was no need of you getting undressed." ::sigh::

Now comes accessing the port. Yeah. Are you ready? I wasn't, but it had to be done, and it was the lesser or all evils. I told them all the history of my port, and accessing it. They listened, and heeded it, bringing a 1 3/4" needle. Leaving a LOT of detail out about accomplishing the feat, two nurses and I had her infusing in not time at all. Not typical fashion mind you, because mine seems to lay strangely. At least those same few nurses will be doing the accessing each month. That's encouraging. I think we will all remember the peculiarities we encountered.

Now. the rate. What about the rate? Clearly I would not finish by 8:00 p.m. if we went at 12.5 ml/hr. They conferred with Dr. Cauli, and after much back and forth, and finally leaving it up to me, we set it at 80 ml/hr! I say the man is crafty. He had told me he was starting it at the rate I was receiving it at St. Francis, and under Dr. Saeed, which that is what my orders specified. He did what he said he would do. He was true to his word. In the course of conversation between the nurses, he said if I went the higher rate in an attempt to complete it, but was unable to tolerate it, then we would just have to stop the infusion. Aaaha! The woman will build her own web here. If she wants/needs it badly enough, she will see that she gets it. The proof is in the pudding. The nurses and I did a lot of talking, and collectively we came to the conclusion of beginning at 80 ml/hr. Monday, and the week was off to a start, and with a bang of confidence! Yeah. Monday is not a *teller* anyway. Side effects never show the first day, except for the time I was already having problems with them when the IVIG started. Later Monday afternoon we reassessed the situation, and it was apparent that we were not going to get through by 8:00 p.m. What to do? If I upped it to 100 ml/hr all would be well. Oh. my. gosh. What in the world would that be like to have 100 or more ml/hr coursing through my veins? I had no idea, but I was game to give it a whirl, so uuuup it went to over 100 ml/hr, calculated to finish by the magic hour. Now, we sat back to watch and wait by the drip, drip, drip, drip. Bingo! Not quite finished, but no stopping the show as it was going so well. All of a sudden the IV pump brings us from any dreamland into which we may have drifted.


Tomorrow's a new day!

Tracy and Matt at Dillards

Striving for a world without Myasthenia Gravis