Monday, December 31, 2007

Living


One of my good friends commented that she thinks I should be writing more about the LIVING aspects of my life, rather than just the disease. I have been thinking very much along the same lines. Unfortunately, the MG and all the drugs and treatments and side effects have taken over our lives. It has crossed my mind several times that once we are through the chemo and I am well, I won't have anything to talk about anymore. One of my wonderful nurses said that I have much more to talk about than I might think. lol I am pretty sure that is a comment on my being a blabbermouth when I am being infused.


The thing is, being on hold and not knowing if the anemia was another huge health problem has really tapped my energy. Just sucked a lot of my ability to think positively right out of my body. I was filling out some paper work the other day, and it asked occupation. All I could think of was "professional patient/ sick person". Now I know this sounds like sour grapes. Seriously. I try not to complain. I hate to be like that. I don't want to worry anyone.


We are facing a big hurdle here, and doing our very best to stay on top of things. It is daunting to look at my calendar for the next month. There isn't a week without at least 2 doctor's appointments or treatments. We will get through this, and I am going to be well. Life is going to be so different after this treatment. Believe it or not, I am actually kind of excited to be going ahead with the chemo. I have been waiting and praying to be healthy for so long- I just know this is going to do it and I can't wait to get started. In just a week or so we will have the answer from Dr. Buff if/when I will get going on this.


On the home front, the kids and Jason and I are starting to see the light after being sick since Christmas Day. I'll tell you, if there is anytime to have an entire family sick, right after Christmas when you have a house full of new toys is a good time to do it. Right now the kids are putting away the new trains and setting up a ball for all the barbies. Katherine is a lovely Sleeping Beauty, and Thomas has a very interesting fur collar and fuzzy hat on over his Lightening McQueen pajamas. Katherine has informed me that if I am not formally dressed I will be thrown out of the ball. I suppose I better go put on some fancy attire, so my children don't kick me out into the snow.


Have a safe and Happy New Year's Eve everyone!!!!

Saturday, December 29, 2007

I'll Take What I Can Get

Hello everyone! I am so excited about the new subscriber feature my friend Jess helped me to install on the blog. By the way, have I mentioned that I detest the word Blog? I so prefer online diary. I suppose it is a resistance to the changes happening in the world and my general resistance to technology and most things computer related. Some part of me still pictures Mr. Wild back in Montvale and that awful computer class we were forced to take on commodore 64s. Remember the big black screens with all the green writing and all those terrible flickers? It makes me nauseous just thinking about it. Kathy and I would do just about anything to avoid that class. We spent hours upon hours re-arranging the art store room and putting up the displays in the windows we had throughout the school. Oh good old Fieldstone Middle School!

Forgive the rambling. I know this is a site about Myasthenia and my travels, but sometimes I just don't feel like talking about it. Or writing about it for that matter. I suppose that is why you all check the site, though, so I guess I will fill you all in. This morning we spent a few hours in the ER with Katherine with suspected Appendicitis. It looks like it is just a tummy bug, but I am glad that I brought her in, regardless. She was just fantastic with all the poking and prodding and the xrays. I was very proud of her. Life goes on, despite all that is happening in my body! My beautiful children still need a Mommy- and I am happy to fill the position.

Yesterday I spent first part of the morning with the hemo/oncologist to have MORE blood work and then getting the results of the Bone Marrow Biopsy. It is amazing, all that I know about MG and all that I don't know about blood and bone marrow. I became pretty overwhelmed. I am sure Dr. Buff (the hemo/onc) must feel like he has answered the same questions a million times. Unfortunately, I continue to ask the same questions repeatedly and rephrased either because I don't understand the answers, or because I would like to get different answers. All in all, it is good news. There isn't anything terrible going on in my marrow. Apparently the Red Blood Cell/ White Blood Cell ratio is off- with there being more RBC that are necessary. Dr. Buff is taking this as a good sign that whatever the event was that caused the severe anemia has passed. It could have been a virus in my blood (which we tested for, but could have already cleared by the time we did the tests) or it could have been some medicine that I took. I am going with the second choice although the Doctors are all skeptical. Cyclosporin doesn't usually cause hemolitic anemia.... but then it also doesn't totally incapacitate most people like it did to me. Nor are there many myasthenics who are so drug resistant they are forced to re-boot their immune system. So for the sake of my mental stability and to allow myself to continue to think positively, I am going to blame the cyclosporin.

The really excellent news is that it was worth doing the BMB- I would have been kind of upset if he had said it was useless! He is now comfortable going forward with the chemo, so long as my hematacrit doesn't drop again. I had 60g IVIg immediately after my appointment with him and he wants to wait a week or two to be absolutely certain that it isn't the IVIg causing the anemia. I am sure it is not. For now I am holding steady with a CRT of 29. Supposedly it should be around 44- I am pretty sure mine has never been over 37, so we are hoping to get it up in the low 30s. Dr. Buff said that I do have a lot of immature red blood cells which would also be indicative of a problem that has resolved itself.

The IVIg went well this time. The fantastic nurses up in the infusion center took great care of me, and went ahead and gave me the zofran (anti-nausea) before I even started the infusion. I then ordered my standard grilled cheese, french fries and chocolate chip cookies with lots of ketchup. Add a diet coke and I am in heaven. Well, not heaven, exactly, but I will take what I can get.

Thursday, December 27, 2007

Thank you Jess- You can now subscribe to my blog!

Thanks to the help from my friend Jessica (in Guam), you can now subscribe to my blog. Every time I update the blog you will recieve an email......cool huh?

I am losing my mind

Oh my gosh.... I have been trying to attach a link to the site here so that everyone can just sign up and be updated whenever I add an entry. I have been working on this for at least 2 hours and I am going to throw the laptop across the room. Interesting. Doctors can stick me over and over again and grab pieces of bone out of my hip and tell me I could die from MG, and somehow the fact that I can't get this feed thing to work has made me lose my marbles. UGGG anyone who can help me, please send me an email for goodness sake!

Wednesday, December 26, 2007

Merry Christmas


Santa was very good to us all. The kids had a wonderful Christmas Eve and Day. Katherine was particularly enthralled with her new roller skates and Thomas was out of his mind thrilled with his new GeoTrax train set. Today we are all just laying low- both kids have fevers, so we are just relaxing. Of course, relaxing is not one of the things that I am good at, so I have anxiety just sitting here! But Jason got me a wonderful book called "talking hands" about a village where people use sign language regardless of whether they are Deaf or hearing. Hopefully I will get to read a little of that. Or I could possibly finish writing my Christmas cards- now that it is December 26th. Oops. Forgive me, I have had a few things on my plate!

So what has been on my plate? Well, as some of you might have guessed since I didn't write before Christmas, I did end up having the Bone Marrow Biopsy on Friday. My blood work was kind of "iffy", so we decided to go ahead with the test. The thought of waiting and not knowing any longer was just out of the question. That is certainly one of the hardest thing about this- waiting and still feeling lousy. I always thought Katherine was the impatient one around here... turns out I am kind of that way too! I actually don't feel all that bad, just getting weaker and weaker, but we had a pretty normal Christmas, and I don't think anyone would have ever known all that is going on, except for the little limp I have at the moment from the BMB. I don't really know what the test is going to tell us. The big thing is that we will find out if all these immunosuppressants have done anything really nasty to my bone marrow and have changed my ability to produce cells.

Everyone I spoke to before the test pretty much told me that it wasn't that bad... that the Lidocaine was the worst part, and then there was just a lot of pressure. Being that I am superwoman, I figured I would be just fine. Let me tell you... I did not feel just pressure. lol. I can think of about 9 million other things that I would like to do on the Friday before Christmas other than having a BMB. If you are looking for a fun activity to do in your spare time, this is NOT it. But it is over, and hopefully we will get some answers, so it will all be worth it. If I ever have to have another one, I will be much more prepared- it is a feeling unlike anything I have ever experienced, and I just wasn't ready for it, I guess. Oh well, I guess I am not superwoman after all. I suppose even superwoman could feel pain, though. Do you think she got PMS too?

Currently I am scheduled for IVIg again on Friday, and I will also be seeing the hemo/oncologist to find out the results of the biopsy. We are at least doing a fairly good job of keeping on top of the MG. I am still feeling fairly strong. If it weren't such a pain, risk, inconvenience to keep doing the IVIg forever, I guess I would do that. But it isn't realistic to keep going in for this all the time, at least not long term. Plus all it takes is a cold or infection to throw me into crisis. As you can imagine, I would prefer to avoid that at all costs. My Christmas wish, and hope for the New Year, is to find the source of the anemia, fix it, and get going on the chemo. And my wish for all of you is that you enjoy your families and friends. Life is so precious.

Wednesday, December 19, 2007

But you look so good!

My new thought whenever anyone says how great I look: How fantastic could I look if I hadn't been sick and taking every drug under the sun for the past 14 years. I am thinking I could be a super model by now. HA. Not that I want anyone to stop telling me I look good- I appreciate the thoughts very much.

I am glad that I waited to update everyone, because things were extremely complex, and there were theories flying all over the place. I think it might have been kind of concerning for all of you. And, quite frankly, I didn't feel like thinking about it for a while.

Jason and I met with the hematologist/oncologist last Tuesday, and he went ahead and drew MORE blood, if you can believe that. I swear, they must have filled up 10 viles. The hemo/onc is very nice, and more importantly, he is very thorough. Jason and I both got a good feeling from him and are looking forward to working with him.

The good thing is that the ruled out several very nasty virus' and blood disorders that could have been causing the anemia. At the moment, we are watching my blood counts very closely. I am scheduled for a bone marrow biopsy on Friday, but that might not happen if my numbers keep coming up. Yesterday was the first time they have risen in over 2 months! So I might be getting an early Christmas present and not need the biopsy. I will be in early Friday for tests, and then scheduled for the biopsy at 9:30. Keep your fingers crossed.

Last week I had an IVIg on Friday, and for the first time since I stopped the cyclosporin, I really feel like it helped. I am still pretty far from perfect, but I feel much better than I did. I am chopping at the bit to get going on the cytoxan. It is kind of amazing. I am still weak, and I feel it at night, but I am moving around like the energizer bunny during the day. Guess that is what oxygen to the brain will do for you. As always, I am doing my best to not over-do-it. That is a pretty tall order for someone with my personality and two little kids at Christmas time!

There is another thought on the anemia, and I went and saw my GYN yesterday to explore that. She did a biopsy to rule out cancer (which we are pretty certain it is NOT), and I am scheduled for something called an endometrial ablation at the beginning of January. I hope everyone can understand, but I will likely keep further information on that to myself. There are times when sharing all this information with everyone becomes too much for me- I feel exposed. that is really saying something for a woman who is constantly being poked and prodded by doctors and nurses. I don't know, there is just something odd about the whole world knowing when I get my period and things like that.

As always, thank you all for taking the time to check in on me, and thank you for your continued thoughts and prayers. I will do my very best to update the blog before Christmas- maybe after the events on Friday if I am up to it. Our family hopes that you are all having a wonderful holiday season.

Friday, December 7, 2007

Vampire Strikes Again

I had another 2 units of blood on Friday. IVIg on the previous Friday and Monday, appointment in Boston on Thursday and blood transfusion on Friday. This is all very complicated and hard to keep straight.

The appointment with Gorson went very well on Thursday. He is positive about the chemo and completely understands why I want to do the treatments up here instead of Boston. We were even able to voice some of our issues with not having been able to get a hold of him when I was in serious trouble and we were told that the person who was responsible for taking his calls has been let go- so that is good news. He was very clear with his current secretary that if I call she is to put me through "IMMEDIATELY"! Hopefully I won't be calling there in crisis again.

So the only hold up on the chemo now is the anemia. We have to find out why my red blood cells are only hanging around for 2 days instead of 120 like they are supposed to. I am not going to get into the possibilities. All I want is for it to be caused by the cyclosporin (called hemolytic anemia- from medication) and have it go away on it's own. The other possibilities are concerning, but I am not going to worry until there is something to worry about.

The plan this week is to go get more blood work done today (it is no wonder I keep needing transfusions- they keep taking all my blood away!), go see the hematologist/oncologist tomorrow and get another IVIg infusion on Friday assuming I can handle it. I am going to be going in for IVIg every 2 weeks (half dose) and then once a month, piggy-backed to the IVIg, I will get the cytoxan dose. So I will only be spending 2 days in the hospital a month, ideally. Then I have to go in regularly for blood work to make sure the cytoxan is working but I am not getting septic.

I will keep everyone posted. As for right now, I don't know much. It is a waiting game. Hang in there everyone. Happy shopping.

Wednesday, November 28, 2007

The Team Approach


Good news, finally! I had the upper endoscopy and the colonoscopy, and I don't have Crones or even any internal bleeding- at least in the upper and lower! Plus, my Hematocrit was higher than expected given that I had 2 units of blood. So the doctors and I are suspecting that this is evidence that my bone marrow is beginning to produce red blood cells again on it's own. So even though the Guru told us that the Cyclosporin wasn't the cause of the anemia, it is looking like the master was incorrect. Is it coming across that I am a bit disenchanted with my Guru? I have had it with not being able to get in touch with him- and the fact that he doesn't get any of my bloodwork results- or gets them and doesn't have time to look at them. I know he is an excellent Neurologist, but I need an Neurologist who is going to treat ME- not my disease.






I spoke with Dr. Leverett, my primary care who actually CARES, and we have a plan to fight this thing together. No longer will I be in charge of making sure my doctors are able to communicate. They are all aware of each other, and are going to work together to help me get well. I have decided to move all my treatments up here to New Hampshire, rather than trying to coordinate between here and Boston. Exeter has a fantastic cancer center, so they are very familiar with administering Cytoxan (which I will be starting after the holidays). I will be meeting with the Hematology/Oncology group either this week or next to set it all up. Jason and the kids and I went in to see Dr. Logan (my local Neurologist) this morning, and the plan is to manage me with IVIg until my anemia is controlled enough to start the chemotherapy. Dr. Logan is comfortable with the results of my recent kidney function tests and feels that the IVIg will be safe now that the cyclosporin is leaving my system.






I am feeling much less anemic, but the MG is starting to rear its ugly head again. I had some trouble swallowing my pills yesterday, and I was ready to dismiss it, but then I thought twice, and set up IVIg for next week. It is a good thing, because I started to slur again today at about 4 pm. We are going to try our best to stay on top of this thing- I have to get nice and strong to start to kill my immune system!






Sorry to be so technical here- I feel like all I do is talk about medical stuff these days. My awesome sister in law is coming to take the kids this weekend so Jason and I can have some time to ourselves. It is a guard weekend, so we won't have a ton of time, but I am happy to take what I can get.






I am happy with the plan that we have, and thrilled to have all my doctors in the same hospital and in contact with each other. We are going to beat this thing- you all watch me!

Saturday, November 24, 2007

Cha-Cha-Cha Changes

Well, once again, it has been a long time since I have written. It is hard to keep everyone updated regularly when I am not totally sure what is going on. Number one, it has been just about impossible for me to look at the computer screen, my head hurt so bad and my eyes were so blurry. On top of that I was having a hard time thinking clearly, and I didn't want to say things wrong and worry people. I wonder if it is worse to not write anything or to write something and have people take it wrong?

So to fill you all in, I went in and saw my primary care doctor following the transfusions and the IVIg treatments to discuss my meds and what was going on with the anemia. I had been feeling really awful over the weekend but couldn't get in touch with my neuro down in boston. I felt that the cyclosporin was really the culprit of all this mess, so I decided to just stop taking it. But then I kind of freaked out doing something that huge without consulting a doctor and I ended up taking one more dose. Well, that night my blood pressure went up to 179/129 and you can imagine how bad the headache and stomach were with pressure like that. I was able to bring it down with meds and rest, but I was quite honestly a bit frightened. Consequently, I stopped the cyclosporin again on my own until I could get in to see someone. Turns out that was a good move because according to my blood work, if I had taken one more dose of the cyclosporin it was very likely that I would have gone into renal failure and needed dialysis. Lovely. So now I have the MG, severe anemia and my kidneys weren't working. Fun times for all. My poor husband was starting to just lose it. It can be very intense around here.

My primary care got on the horn with the Guru down in Boston and he said that the anemia is likely not from the cyclosporin, but the kidneys and the blood pressure and the headaches were. So out goes the cyclosporin for good. I don't know if anyone remembers, but cyclosporin was the last oral med left to deal with the MG. I have taken all of them, and for one reason or another, I couldn't take them because they shut down other systems in my body. Not trying to be a downer here, just reality.

Here we are: we have to figure out where the anemia is coming from. I have scopes set for Monday, and it is possible that they were right to suspect Crone's Disease last year which would explain the anemia through internal bleeding. If not, we have done some other blood work to find out if there is something else going on with my immune system- it could be that my immune system has now decided to attack my red blood cells as well as my muscles. Keeping my fingers crossed that that isn't the situation here. Regardless, there is the question of what to do with the MG now that I can't take oral meds anymore. I don't know if you all recall, but last year we were considering a treatment plan that included chemotherapy. This is now our last step. No doom and gloom here. This is going to work, folks. I am going to start after the holiday season so I don't have to worry about getting sick. We will have to manage the MG with plasma exchange until we can start the cytoxan because IVIg is tough on your kidneys, and mine need time to heal.

I had another 2 units of blood yesterday, and I am feeling much better today. The family is going to head up to Wolfeboro today to see a holiday parade- I hear that Santa is even going to be there. We are enjoying our time together- Family is the most important thing of all and we are blessed to have each other. Jason is the best husband in the world, my kids are great, both my family and J's family are supportive as can be, and we have awesome friends. I am going to be fine- Just bald for a while! I just know that this is going to do it. REMISSION HERE I COME!

Thursday, November 8, 2007

Sad news.

For the second time since I began this record of my personal journey with Myasthenia Gravis I have found myself completely unable to write a word. What we go through on a daily basis just seemed so insignificant that I felt completely inappropriate writing about me. A local family with whom we are very close suffered the tragedy of losing a child. Their little infant baby girl passed away almost a month ago. We have been working hard to help them through this terrible time and they have shown such strength and love for each other and for their children that we feel we are blessed to just know them and to be part of their lives.

Now I do know that you all would like to be updated on my situation, so I will try to be brief. I started having a really tough time again last week. Very short of breath, trouble talking, chewing, swallowing. The regular stuff. LOL. It just struck me how funny it is calling that regular stuff. The breathing thing was pretty intense, so I called right away to set up for IVIg treatments, since they worked so well last month. I had my first 60 grams on Friday and was set for another 60 on Monday. Saturday I was much improved, although I was feeling extremely tired, and kind of struggling because it was a guard weekend and J wasn't around to help out with the kiddos. Several people offered to help out, but we decided to just hang around the house, and the kids were good about it, so we did fine. Sunday didn't go nearly as well, and by the afternoon I was feeling really lousy. I called my dear friend Jasmine to come and help me, because I was really not feeling safe being alone with Thomas. (Katherine was at Jasmine's house already).

By Monday morning, I was feeling intensely terrible. Just walking from the hall to the bathroom was leaving me gasping. So into the ER we went. J stayed back with the kids, and my wonderful cousin Margo took me in and stayed with me and my folks came down from Wolfeboro as well. Turns out after lots of blood work, lots of oxygen and quite a few tests that my iron had dropped to a dangerously low level and I needed blood transfusions. After 2 of those, I felt much better. The next day I was given my regular 60 grams of IGg (IVIg) and sent home. I am doing so much better, but I am still really taking it easy. I am still pretty wiped out, to be honest. We aren't quite sure yet what caused the anemia, so there are more tests to come. Keep your fingers crossed that it is just an issue of medication and not anything more.

As always, thank you all for your continued support and prayers and please continue to think of us, and our friends during their time of loss.

Friday, October 12, 2007

The Circling of the Wagons

I have been having terrible migraine headaches- so that is why most of you haven't heard from me. I can't really use the computer for long, because the flicker in the screen makes my head scream. I spoke with Dr. Gorson, and he thinks it is a side effect of the increased cyclosporin. So we increased one of the other meds to help counteract it. So far it helped one day and not the next. We are keeping our fingers crossed.

I absolutely must thank my wonderful book club, and my awesome cousins, Margo and Lea for all their help during the past few weeks. I was terrified at the thought of trying to find someone to watch the kids while I went in for MORE treatments, after having just had 5 days in the hospital. So I called my dear friend Michelle and my cousin Margo and my sister, Julia. Jules let me cry for a bit and complain about this sucking- exactly what I needed so I could clear my head and figure out what to do! Next thing you know, Michelle and Margo called and came at me full guns with all kinds of plans for who would take care of the kids and when. Not only that, but once we had the schedule figured out, Michelle called back to check what our food preferences and allergies were- she wanted me to not have to worry about meals for a while. The following night, I returned home from the hospital to a steaming dinner of pasta and meatballs. The next night to wonderful meatloaf and veggies. A delicious baked rigatoni with hidden veggies in the sauce was on the menu on Thursday. And ladies, Cris out did herself on Friday with maple pecan encrusted pork, new potatoes and green beans- she even made an apple crisp! I mean, who has friends like that??? I am blessed to say that I do. Thank you ladies so much for your help and thoughts and prayers. We will get a grip on this thing- someday! Thanks for sticking by me :) Love, Claire

Thursday, September 27, 2007

The Joy of Friendship

Oh, my wonderful, wonderful friends. Jason and I are so grateful for all the help everyone has given us this week. I don't know what I would have done without you all. Helping to watch the kids, cooking us meals- giving me hugs! I am blessed to have such fantastic friends around me.

On the treatment front....
Instead of spreading the infusions out over 5 days, I received the same amount of medicine in a 2 day course. This is the first time I have ever had so much IVIg in one sitting- and to be honest, it is kind of kicking my butt. I don't want to complain. If this works, these side effects will be completely worth it. So if you all don't hear from me, it is probably because my head hurts too much to get on the phone. It is kind of hard to focus on the screen right now with out upsetting my stomach, so I am going to sign off. Just know that I think this is working, and I am thinking of all of you!
Hugs. xoxox

Monday, September 24, 2007

Once Again....

Well folks, the pheresis didn't work. So the Guru and I have decided to give the IVIg another try. I am waiting to hear back how many we are planning on- but the last call was for 5. Not an easy task finding childcare for 2 monkeys (who are a bit cranky with mommy sick for so long now) for 5 days straight.

Jason is able to cover some of it- great husband and daddy that he is! My wonderful cousin, Margo, is going to come sweeping in and save the day for almost all of the rest of the time! And my awesome friend Michelle is going to cover when she can't be here. I will tell you something, it is truly a gift to be surrounded by such caring and fantastic people. In fact, Michelle just called me and told me that there is no need for me to cook all week- that our friends are going to take care of it. I'll tell you, it doesn't get better than that. Thank you all so much.

I will keep everyone updated on the blog here. If you have any questions, feel free to email me or call. I might not feel like talking, but I will do my best to make sure everyone who cares to be is informed of what is happening.

Tuesday, September 18, 2007

And So It Goes




"It is the lingering in the painful past and indecision that Will kill us, the goddamned lingering. And what I think is that we should all keep walking, and stay connected and just keep moving."
from The Elegant Gathering of White Snows by Kris Radish

And so it goes. Moving on from the complaining. Moving on from the on going round of plasma exchange. Moving towards healthy living, and hopefully happy children.

Sunday I got up with the kids even though my wonderful husband said that he would. LOL He just doesn't hear them in the morning. I wish I could sleep like that, but I suppose that sleeping on a carrier with just a few feet of steel between you and the jets landing will teach you to sleep through anything. I completely didn't mind. They really are the light in our lives. There have been days when I just didn't want to keep fighting this disease. Not like I have an alternative in mind, but there are moments of hopelessness when you haven't been able to get control over something like this. So I didn't mind getting up with the kiddos because I haven't been able to spend much time with them what with the trips back and forth to Boston and then the rest days in between. Plus, lets face it, the first shift in the AM is a pretty cushy one.... all you have to do is get their milk, fill up bowls with dry cereal and (here is the best part) snuggle up with them on the couch to watch Curious George and Clifford the Big Red Dog. (Two of my personal favorites, by the way). It is just about the only time during the day that Katherine will snuggle up with you- Thomas will snuggle anytime, as long as there is no baseball paraphernalia laying around.

So there the three of us were, all snugly and happy, and all I was thinking was how sad I was that we hadn't been together like this in almost 2 weeks- and it was all my fault. The guilt I feel is one of the hardest things to deal with. It didn't help that my head was pounding from the cyclosporin, and I was feeling sick to my stomach. After about an hour and a half, I knew I needed to go back to bed. Jason was shocked when I woke him up that I had been up with the kids- he felt really bad- even though there was no reason to. It was my choice to get up. Regardless, I crawled into bed and he went down to be with them. Well, sleep was impossible because of my headache. So I just sat here quietly with my head propped up on pillows. And I listened. I could cry happy tears right now, just thinking about the wonderful sounds I got to hear while I was laying in bed.

J and the kids went out into the garage- undoubtedly pulled by the new Ms. Pac-Man arcade game that must have been screaming to them, "Play Me, Play Me". The garage is directly below our master bedroom- and the machine is practically under my head while I am laying on the bed. So on goes the game and the unmistakable sound effects, mingled with my children's laughter and my husband singing at the top of his lungs a whole smattering of 80's tunes. It was like some kind of twilight zone when I closed my eyes. Somehow I was myself, now, in the old roller rink in Montvale somewhere around 1985. It was a wonderful feeling- even with my head throbbing away. I got up to take a shower, hoping that it would somehow help my head and stomach. After losing my breakfast to the toilet bowl gods, I got in that wonderful hot water and stayed there for what felt like the entire day. I washed away my tears and decided right then and there that I have had ENOUGH. We have had ENOUGH. My family, my children, my friends, we have all had ENOUGH!

I read through some of my more recent blog entries, and I can see how negative they have gotten. Certainly I had a bad summer because of my health, but we were still able to do a lot of fun things. (I suppose if we didn't camp out so much I might have avoided the Lyme disease, but still. LOL) We spent a lot of time together as a family, both nuclear and extended. My wonderful cousins came up to see us from Long Island, Katherine learned to swim, Thomas moved into a big boy bed, Jason finally switched out of the scheduling office and has had perma-grin ever since, and I had some times there when I was feeling pretty good. I even took the kids to the Beach, to Water Country, to Vermont to visit my whole other family (that is another story for those of you who don't know), and we made countless trips to J's parents pool. The best news of the summer, of the year, probably of the decade, is that my folks are moving to Wolfeboro- which is just over an hour from here. Huge improvement over the 6++ hour drive from PA. So when you get down to it, things are really pretty great. As Jason has said numerous times, "All we need now is for you to stop trying to die on us!". Believe me everyone, I am working really hard on that :)

The Nitty-Gritty
I suppose that is enough of the philosophy of Claire for the day...

It has come to my attention that quite a few people are asking themselves, and Jason, and me, what happened that caused yet another exacerbation. First of all, the antibodies and the mechanism that produces them are just there- there isn't much I can do to control that. The meds help to keep the disease at bay, but they aren't a cure. It is the best thing for me to avoid getting stressed, sick or tired. All of which is pretty much a joke for us humans, especially when you have kids and you take immunosuppressants. Ahhh, the dilemmas we face :) It is kind of like taking a disease where you can't speak and naming it Myasthenia Gravis. Do you have any idea how difficult that is to say when your tongue isn't moving? (How many of you are trying that right now? Tough isn't it? heehee)

So the crux of what happened this summer:
End of April- finished plasma exchanges (6) That usually holds me for about a month to six weeks.
End of May/Beginning of June- Started having symptoms again. Combined with a breast infection and the breast lumps that turned out after weeks of worrying to be abscesses. I was put on antibiotics for the infection. MG symptoms went away. Had my blood draw, and Cyclosporin level was in the 400s (excellent numbers) Other than the pain in my breasts, I felt good.
End of June- ended antibiotics. started having symptoms again. Continued to get worse and worse- and there was pain in all my joints, turned out to be Lyme Disease. Went on antibiotics. MG symptoms went away again. Reacted to the antibiotic-switched to another and finished the course. MG symptoms came back
August- MG is back full force, and i keep thinking there is some other infection. Nothing works. Finally call Boston and start this course of pheresis.

Anyone see the pattern? When I was on antibiotics, I was basically fine. Ahha- turns out cyclosporin is a wonderful drug that interacts with just about everything, from other drugs to the food you eat. And, get this, antibiotics help with the absorption of the cyclosporin making a lower dose do the job of a much higher dose. That, my friends is why we have increased the cyclosporin level to 200 mg twice a day. The key is to get the right amount of meds with the least amount of side effects. (Electrolysis anyone? And don't be surprised if you see me wearing gloves when it is 65 degrees outside!) We had to do the pheresis because I was headed towards being tubed because of the trouble breathing and difficulty swallowing. Please say a prayer of thanks that the plasma exchanges work so well, and that they continue to do so. These treatments should hold me until the higher dose kicks in, and if that doesn't kick in as quickly as we would like, we can keep doing the exchanges, as long as they work and my arms hold out.

So that is it for now. I think I am getting close to having a whole book written here. Love to you all. Keep smiling and enjoy the leaves changing.

Sunday, September 16, 2007

On Hold

I have just read over my last entry. Kind of intense. Oh well. Living like this with all the ups and downs gets pretty intense at times.

I am feeling a lot better. I have just completed the last of 5 plasma exchanges, and I should be 100%, but that isn't the case. Dr. Gorson and I are disappointed that the treatments didn't have the magical effect they usually do. We are going to give it a few days to see how I do. If I still am having a tough time next week, we will do more exchanges. Right now, we need to give my arms a break. My red blood cell count is also really low, and I am severely anemic, so we need to give my body a chance to regenerate, and let the iron pills do their work.

So for now, I am just laying low and hanging out with the kids. I have started the new dose of cyclosporin, and other than being nauseous and having a constant headache, the side effects aren't bothering me too much. I am hoping that this feeling like I am hungover all the time will improve as my body adjusts to the higher dose. Gorson really thinks this is going to work- and if not, we still have cytoxan as an option. Keep your fingers crossed!

Monday, September 10, 2007

Here We Go Again

Well, did I not just say last week that we have been waiting for the bottom to fall out? I have been back down to Boston again- twice last week and once this week, with at least 2 more treatments to go.

It is time for me to stop kidding myself into thinking I can lead this normal life- I will be fine, as usual, but I need to face the fact that even when I feel good, I am not normal. Not like I want to be. Hey, I don't want to be a downer- It is just time to be a realist. The key here is to be a realist and somehow continue to be an optimist. I can do that. Heck. I am superwoman after all.

So apparently it is time for me to stop going to picnics when I am exhausted- let Jase take the kids and come home to a rested and healthier me. Let's face it folks, I can cover all this with jokes and meds and wine- all will give me some temporary relief- but they are just masking the fact that I will keep getting worse if I don't just STOP.

So the new plan (same as the old plan, really) is to get me back under control with Plasma exchanges, increase my cyclosporin level and continue to rest in the middle of the day. I am also supposed to never get sick. So I guess it is time to sell the kids to the gypsies. Although the heartbreak would probably be enough to land me 6 feet under.

I saw Dr. Gorson today, and the blood draws came back with everything looking good, except that my cyclosporin level was too low- which I am taking as a big positive. To be brief, that means that there isn't enough medicine in my system to keep me from going into crisis. I am overall feeling better, antibody by antibody! It will take some time for the meds to kick in, but the plasma exchanges should carry me through this rough spot.

As always, thanks for keeping up with what is going on with me, and we welcome your continued thoughts and prayers- put one in there that I will somehow after 12 and a half years learn to slow down!!!!

Addendum
I was just upstairs putting the kiddos to bed. Thomas was screaming his head off wanting me to snuggle him to sleep and Katherine was asking me to finish reading her book and say prayers with her. All the while, I am thinking about Jason being worn out from all the pressures of taking the kids for the day, working, doing the finances and worrying about his wife. I am also worried about my whole family and the strain this has put on all of them.

And then I started to get angry.

I just need to put this out there: THIS IS NOT MY FAULT. I didn't do anything to ask for this disease- and even if I am going to picnics or changing diapers or going up and down stairs or reading instead of sleeping (by the way, I am not always TIRED- just fatigued), this can still happen. Certainly, I need to slow down once it starts. I make jokes about being superwoman, but I really do try very hard to take it easy when I am feeling weak. The thing is, it is just about impossible to slow down when you have a 4 and a 2 year old. I just try to save up my energy to make it to some of the things that are important to me and to my children and husband.

I love my family more than anything in the world. I hate this disease more than anything in the world.
Posted by claire at 7:37 PM 0 comments
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Monday, August 27, 2007

Waiting Game?

So, I know it has been a long time since I have made an entry. Once again, thank you all for your continued support and thoughts and prayers. It has been a very busy summer, and there were so many times I wanted to fill you all in, but I just didn't have it in me. I was doing unbelievably well. So well in fact that Jason and I were just waiting for things to fall apart. When you have lived with a disease like this for as long as we have, you understand that if there is a high high, there will eventually be a low low. Luckily that hasn't happened! Dr. Gorson seems pretty convinced that it isn't ever going to happen again. We aren't so sure... but we are trying to think positively.

There hasn't been a real low this summer, but that isn't to say things have been easy. I was having intermittent symptoms which I was able to control through extra rest- honestly, there are days that this 34 year old woman feels very much like her 4 year old daughter- I just don't want to lay down in the middle of the day!!! For a while there, we were doing great, as long as I went to bed reasonably early, remembered to eat 3 times a day plus snacks, took my meds and took a nap each day. It wasn't a terrible existence, just not totally reasonable- it is hard to live a normal life when you have to eat and sleep like a toddler. See, this is one of the reasons I didn't want to write. I really dislike complaining. Life is precious, our children are wonderful and we have a really fun social life and a fantastic marriage, so complaining about needing to nap sounds pretty silly to me. Regardless- that was where I was.


Some scary moments...

As I was saying, things were going very well, and then I started having these pains in my breasts. Thankfully it turned out to be basically nothing- just two breast infections followed by some abscesses that ended up draining on their own. It was a stressful time, but I was feeling good otherwise. In fact, I felt well enough that we had started walking around the block just about every night. So when my legs began to hurt, and my knees started to swell, I figured I had just pushed too hard. And we took a break from our walks. The pain continued, and I began feeling like I had a hangover all the time. Aches and pains, headaches, neck pain and insane dizziness. Finally one morning I woke up and just completely couldn't walk. And of course the Myasthenia reared it's ugly head in a major way. Nothing helped. No amount of sleep, meds or even wine gave me relief. So I called Gorson- we agreed that it didn't sound like it was MG- I mean the pain, that is. Off to my primary care- I went hobbled right in and said, I either have Lyme disease or Rhumatoid arthritis. After a 2 hour exam, she came up with "you either have Lyme disease or RA". She has been added to the list of people who think I deserve a medical degree just for living through all this over and over again.

Add one more medicine to my list. I did get relief within a few days, and now of course I am paranoid about just walking outside, and checking the kids for spots at least 10 times a day. All seemed to be improving, and I was just so relieved that it wasn't RA. I don't know how I could handle a third auto-immune disease. The meds made me sick to my stomach, but I figured I could handle anything for a month. Jason left for Guam with me improving steadily as the days went on. That was until I went into the sun. I am apparently very sensitive to this medicine, and exposure to the sun makes it much more severe. So the burning sensation started , and intensified, and intensified, until I thought I was going to rip my skin off from the itching and burning. I spent the entire night in the shower- it was the only thing that gave me even temporary relief.

Super Hero Complex

Here is where the stubborness of Claire comes in. I most definately should have gone to the ER. Oh well. Hopefully there won't be a next time, but if there is, I will know better than to try to tough it out. I am not sure when I am going to learn that health matters are not really a situation where Mind over Matter works. The power of positive thinking is great and all, but I absolutely must face the fact that I just have these diseases and I need to keep treating myself as if I were my own child, rather than behaving as if I am superwoman. (I am sure that I will never be convinced that I am not part super hero!) I believe that I am always going to make it through things, and that is a good thing, in my mind. It is a matter of setting limits and realizing when it is time to go for help. Good lesson for a myasthnic- and one I have to keep being reminded of.

Current Situation

I have finally finished the antibiotics for the Lyme disease, and the only residual effects seem to be that I am very stiff in the mornings and if I have been sitting for a long time. That will hopefully pass with the stretching and exercise that I am trying to keep at.

Unfortunately, the MG has taken its toll on me lately. Not sure what is going on. I probably have some kind of secondary infection- but I am not getting worse as the days go on, and I am prepared to wait a few more days unless there is a big change in that. If anyone is wondering why I haven't called you in a while, I just don't want to have to keep cleaning the phone as I spit all over it trying to have a conversation. heehee. It is a bit uncomfortable to talk, but I am not having and swallowing or breathing issues, and that is the upside! The kids are learning to work things out for themselves, since it is too difficult for me to talk to get involved in the skirmishes that a 4 and a 2 year old have every 10 minutes. :)

Again, thank you all for your continued thoughts and prayers. Love you! Claire

Tuesday, July 17, 2007

More to come

Below is a photo from Thomas' 2nd birthday. Our neighbors were wonderful enough to bring over their real Johnny Popper for Tom's party. It was a huge hit!!!


I have been working hard on my next blog entry. I haven't been able to post it, because it isn't finished, and it is a little too emotional right now for me to feel comfortable sharing it with the world.

We appreciate all the continued support that everyone has given us, and I will share my thoughts with you all when I feel a little more secure.

All I will say is that I am significantly improved, and the symptoms that I have been dealing with are called "break-thoroughs" and will likely come and go for the rest of my life, as long as the cyclosporin continues to work. We are doing just fine, and although they are frustrating and unpredictable, we are managing with the help of our wonderful family and friends!

Friday, July 6, 2007

borrowed time

I am sure some of you have been concerned, and I thank you for that. I appreciate all the calls and the emails I have been getting, and I am sorry for not responding earlier. To tell you the truth, there are several reasons why I haven't written sooner. At first, I was extremely hesitant to write because I was feeling so good. When you have been living with something this huge for so long, there are times when you just want to forget about it if you can. The plasma exchanges worked very well, and I stayed healthy (as long as I got enough rest and took naps everyday) for quite a few weeks. Both Jason and I felt like we were living on borrowed time. We couldn't believe that things were going so well, and we were both holding our breath waiting for the bottom to fall out. We have been through this cycle quite a few times, and things have always fallen apart, eventually. So we don't have much trust in medicines or long term remissions. No matter how positive I come across, I guess this gets to the meat of it. When I am feeling good, I am just waiting to feel terrible all over again. To scare my family, to feel helpless. To feel like a sick person all over again.

Wednesday, June 20, 2007

Long time- No time!

Sorry if my lack of entries has worried anyone. I really haven't had much free time, and I was feeling so well that I suppose I didn't care to write or talk about what was going on with my health.

I will write more when I have some time to myself- I just wanted to get out there that I am doing pretty well for those of you who were concerned.

Monday, May 21, 2007

Still Hanging in there


It has now been 3 weeks since my last plasma exchange, and I am still feeling strong, despite having had a terrible cold and dealing with poor Thomas. Our little man had 3 molars break through and battled a 104 temp and an ear infection. All this following the little guy giving up his beloved binkie the weekend before. It was a trying week, to say the least. I went a full 8 days without a full night's sleep- and yet, I am still asymptomatic. This is excellent news!!! It really looks as though the cyclosporin is going to do the trick. The only side effect that is troublesome thus far is the tingling in my hands and feet. It is a little like having frostbite. I can absolutely live with that.


I am still coming down off of the steroids- never fast enough for me, but coming off them all the same. I am very tired of hating my face. After having been sooo thin, I can deal with the body changes, but it really drives me nuts to look in the mirror and not look like myself. Whatever. I won't dwell on that. Even I am tired of hearing me talk about it. I am posting a picture of last weekend- Note the skinny legs and big ol' head. LOL. Someday I will be back to my normal proportions.

Friday, May 11, 2007

A thank you.

THANKS
I would like to start by saying how very grateful Jason and the kids and I are for the outpouring of support from everyone. When people hear about what has been going on with us, they are always very generous with offers to help. We have gotten much better (I really struggled with accepting outside help) at accepting your offers, and we want everyone to know how much we appreciate it. We have both always been "go-getters" so it is hard for us to not be able to do some of the simple things everyone takes for granted by ourselves. I am hesitant to list all the wonderful people who have been so kind, both with your time and your thoughts, in case people don't want their names shot out over the internet, and also because my memory is horrible due to lack of sleep and drugs, so I am terrified that I might forget someone! You all know who you are, and we love you for all you have done. Friends, family, neighbors, cousins and all the staff at Kate's school- not to mention all the health professionals who have taken such good care of me- Thank you.

It is thrilling for me to hear such positive feedback from this site. I am shocked at how many people are coming up to me, emailing or calling and saying that they like what I am doing, and that many people didn't know what was going on until now. It isn't that we kept this a secret or anything, it just isn't something that we often talk about unless we need to. Having this blog has made my life and the lives of the kids so much better- I am so happy that people can see that even though we live with this monster in our lives, we are still functioning and I hope that it is coming across that we are still laughing A LOT. The kids have benefited the most, in my mind, because they aren't forced to hear me talking about meds and dosages and blood pressure, etc, etc, etc. I am able to just be Mommy- and I love that.

I haven't written much lately, mostly due to the fact that I have been feeling good. We live in this crazy cycle of me being very ill and then we have a period like this when we can kind of forget that the disease is still floating around in my body waiting for me to get a cold or have a hormonal shift or get a cut so it can start producing anti-bodies like mad. Oh, that sounds so glum. Forgive me, the other reason I haven't written much is because the decrease in steroids has made me kind of angry and feeling pessimistic- which goes against every grain of my being. It will be worth it in the end, but all these drugs do kind of get to you. Kind of is the understatement of the century here. Honestly, sometimes the decrease in steroids is worse than being on them full strength. And I expect to feel better yesterday- not have to take my time and slowly wean and eventually feel better. One of my dear friends told me back in college- "you are the kind of person who does everything 1000% or not at all"- ahhh. Lenny, you know me all too well. And I seem to have married the same kind of person- does that mean that together we do things 2000%? (How can you even have more than 100%)? Heaven help us. LOL But we do work extremely well together- certainly in these tough times, but as I said, our home is one that is filled with laughter, and I think that is one of the greatest blessings of all.


CURRENT HEALTH
Now that I have gone on about feelings and such, I suppose I can give you all an update on my health. For now, I am still feeling pretty strong. As I said, I am having a tough time with the steroid withdrawl, and the Guru did tell me that if I decreased too rapidly that we could see a flare of symptoms. He explained that by decreasing too fast, we are asking the cyclosporin to work twice as hard at the same time we are asking the prednisone to stop working all together. And my body just cant adjust that quickly. Unfortunatly, the steroids sometimes cause me to make some not so well thought out decisions that I think are wonderful- like tapering 5mg every 3 days, rather than the 5mg every two weeks that I orginally agreed to. The prednisone can really make a person crazy. I go from feeling like superwoman one second to feeling like I can't even move to go to the bathroom the next. All the while being scared to death that nothing is going to work and we are going to be on this horrible roller coaster for the rest of our lives. See- the steroids have me saying not so positive things!!! Not that they aren't true, mind you, just that we ususally just deal with them and don't talk about them like that. So to try to ease this physical and mental strain, I am going to slow down the taper- even if that means I won't have a jawline for my friend's wedding next weekend. (ah ha- she admits the ulterior motive on the fast taper!)


UPBEAT PLANS
We have a wonderful weekend planned, with our standard neighbor bar-b-que for dinner tonight and some old wonderful friends coming in for the weekend. Then we have mommy's day on sunday- Katherine has something special for me that she made at school- I can't wait to see what it is. And I have been keeping us busy- everyday has been another adventure. The hit of the week was that we bought a huge plastic kiddie pool. It is wonderful to see the kids and their friends and neighbors splashing around. The other night we let them have a tub in there after all the playdates were finished. I thought Chris next door was going to die laughing when he heard me say across the yard, "oh no Thomas- we don't poop in the pool!" And little Thomas was so proud of himself. Ha. Needless to say, outdoor tub came to an abrupt end. Thankfully we empty the water out every night.

Happy Mother's Day to all you Mommies out there!

Monday, May 7, 2007

Hyperactive Super Steroid Lady

I am super woman. I can do anything. Or I think I can. I have gotten all my strength back- and I remember how great it feels to not have MG. This is sometimes where I run into trouble. I have had all these treatments and I can feel the medicines pumping through my veins. After having been through so much you would think that I would be able to behave in moderate ways to help keep myself healthy. I try, but it is hard not to push too hard, play too hard or stay up too late! The prednisone has me feeling like a jittery maniac with superhuman strength. I am only tired the first thing in the morning, and once I get moving, I feel like I am even stronger than any normal person. It is a very tricky spot to be in. I want to feel good and stay feeling good, but I have hated feeling sick and tired for so long, and I don't ever want to stop moving and doing things. It is as if Jason, the kids and I are celebrating my current state of health while mourning for the way we wish our lives were (not that the kids know any different) and waiting for things to fall apart again.

I have been forcing myself to lay down with the kiddos everyday. I am just about never able to even rest during that time, though. I am making lists and literally twitching to get out of bed and start organizing closets or mopping floors. It is hard for me to even sit here and type this out. The steroids have made me feel like this in the past... but this time is probably the worst. I can't stand to be in my own body- it is like I have had about 300 cups of coffee. If it weren't for the sleep meds and other stabilizers I am taking to combat the steroids, I am pretty sure I could stay awake and clean the entire neighborhood. My label maker is currently my best friend. And don't even think about getting on the phone with me. I can barely keep a train of thought for more than a minute, and I am talking and rambling on at 500 miles per hour. I then immediately forget everything that I have talked about, or even who I am speaking to. I wonder if this is what it feels like to have ADD? I am hyperactive, for sure.

I am congratulating myself for at least recognizing the situation and trying to behave moderately. It is a lot like dieting- the more I try to slow down, the faster I want to go. You know when you want chips or chocolate so badly that it is all you can think about? If you just had one bite, you could probably stop thinking about it. I now have a taste of health, and I want to savor it. I don't want to slide back into being sick and feeling weak- there is a frantic feeling that this won't last and I need to get everything done and enjoy every second "just in case".

I am looking so forward to being off the steroids all together. After the pheresis has worn off (about 3 weeks or so from my last exchange) and after I am off of the prednisone, it is just a waiting game to see if the cyclosporin is working. I think I mentioned that the medicine in my blood has reached the therapeutic level. What does that mean? If the symptoms return, once all the other stuff is out of my system and the pheresis has worn off, then the drug isn't working. But that isn't going to happen, is it?!
Thank you all once again for all your thoughts and prayers.

Wednesday, May 2, 2007

All is well.

Hi folks.
I have been feeling pretty good... in fact, I have had some super steroid strength in the past few days. I just haven't had a lot of time to type out what has been going on. I only wanted to post something so you all wouldn't start to worry that I hadn't written in a while. I will be doing some more work on the site this weekend.
Take care! Claire

Sunday, April 29, 2007

Hurray for my arms!!!


Let's all give a cheer for my poor little arms. They held out and I was able to get what will hopefully be my last plasma-exchange yesterday. For this round anyway.
The Real Deal...
It has been a very long few weeks, and we are all pretty worn down. So many people have written and called to tell me that they are thinking of me, and many of you have called me an inspiration. These are wonderful, flattering words, and I truly appreciate them. It isn't that I am always smiling and thinking that things are just fine. I am certainly a very positive person, but there are times when even I get down. I suppose I wouldn't be human if I didn't feel some anger towards this disease and what it has done to me and to my family. There is huge guilt that comes along with accepting help- but I don't have a choice.
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When it comes down to it, I hate the disease, but I know how to live with it. More than anything HATE the drugs that come along with the disease. I hate the way they make me feel and look. But I know they are a temporary, necessary evil, so I stick with them. This most recent exacerbation has been so hard because we tried using the prednisone and then the IVIg (five times) and none of that worked. So since February I have been taking drugs that I hate that haven't done what they needed to do. And then I had to truck down to Boston every other day for 2 more weeks for 5 more treatments. It is just a lot to handle. That includes involving all the fantastic people who rally when I get into trouble- and not being able to be the full time mom and wife that I love being. Plus, this exacerbation is following the last one in November when I ended up in ICU, which also took several months to get out of. Basically, the past 3 years have been a series of one crisis after another.
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I hope that I don't sound like I am whining here- it is what it is. I am just saying, people see me and so many say, "wow, you LOOK great" and I know they are surprised. That is one of the things about this disease that is hard to live with. People can't see what is going on inside of me, and how much of a struggle some of the things that everyone takes for granted are for me. Like using a hairdryer, or writing a letter, or chewing a bagel. And I know that the steroids have made me gain weight like they do to lots of people- lets face it I was way to thin to begin with, but hey, 30lbs is 30lbs even if you started out being too thin. It is still a shock to your system, and it is hard to look in the mirror at a face you don't recognize as your own.
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My Mom gave me such a boost last week. She kept telling me how proud she was of me and how I handle all this (and she gave me lots of hugs- which was just what I needed last week). After leaving my primary care appointment when I found out about the high blood pressure, I had gotten a lot of information to process, not all of it good- and I just asked my folks to hang in there with me. Mommy commented after I had moved through my thoughts and made sense of it all that she thinks it is great that I am able to take whatever they throw at me and deal with it. It is true- I deal with one thing at a time and make it work for me. I keep getting thrown these curve balls, and I have to keep making it work. There is no alternative, and I will not be walking around complaining all the time. I do want to say thank you to those of you who listen when I do need to complain, or cry or just yell. You all know who you are- and I cherish each and every one of you!
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Enough of that....Now for some explanations and good news. I am feeling much stronger after the last treatment, and if this cold doesn't throw a wrench in it (once the body starts producing antibodies to fight infection, it usually produces MG antibodies too), I think this series of pheresis is going to hold me for a while. I had a tough night last night- these darn steroids keep you from sleeping, and the cold didn't help- and I still feel stronger today than I did yesterday. In the past, a series of 5 would keep me strong for about 3-4 weeks, and then I would have to start the process all over again. The big difference this time is that I am taking the cyclosporin, and the goal is to get me off the steroids and on the cyclosporin, hopefully not needing to go in for pheresis at all, or very rarely. I am down to 25 mg of prednisone, and tapering as planned. I wish we could go faster, but I am going to listen to the Guru- who is a huge fan of what is in my mind a ridiculously slow taper. (I am pretty sure he has never taken prednisone lol).
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The best news of all is that my last cyclosporin level showed that I have gone from a 55 to a 301!!!! The optimal dose is between 100-400. That means once I am off the steroids and the pheresis has worn off, we will know FOR SURE if the drug is going to work or not. I actually cried when Janice, my nurse, told me. And the most excellent thing is, if this doesn't work, which IT WILL, we have a plan. We will be using the pheresis if I get into any trouble- and I am to call the minute I start to feel it, not wait until I am sounding like I have had a case of wine at 10am. Hopefully that will keep the pheresis down to a minimum- like maybe one or two treatments rather than 5. If I continue to need the pheresis on a regular basis, then we can assume with conviction that the cyclosporin is not doing what it needs to do, and then we move on to the cytoxan. I am not going to get into details about that, since I am certain that I am not going to need it.
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Photo explanation... For those of you who are interested in what is going on in the photo above, in everyday non medical speak, the tubes in my arms are attached to dialysis needles going into the crook of my arms. The hardest thing about that is the needles are made of steel, so you absolutely can't move a muscle during the treatments. Very hard when you are taking diuretics, by the way! I am an old pro at it, though. I am usually floating by the end of the 2 hours (depending on how much time it takes to hook me up, I can be sitting like that for 3 hours or so). Jan and Danata keep telling me we can use a bedpan- but I am not willing to go there yet. I digress.
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Usually, the right arm is the arm that they draw the blood from. I think they do that because it is my stronger arm, and I have to use a little ball to pump the veins every once and a while. The left arm gets really tired when they draw from there. The blood is then moved through all the tubing to a centrifuge where the plasma is separated from the red and white blood cells. That big yucky looking bag hanging on the machine (right side) is the old plasma- filled with those nasty antibodies that are causing these symptoms. The problem is that the plasma also has all kinds of good stuff in it- proteins, etc. That is one of the reasons that we do the exchanges every other day- to let my body play a little catch up.
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After the plasma has been removed, albumin (and some saline) is then added to the red and white blood cells and the new "clean" blood is then pumped back into my left arm. The albumin is hanging in those bottles. The white thing that looks like it has lines on it is the heater. We spend a lot of time turning that thing on and off during my treatments, because I tend to get very warm- then cold. The treatment leaves me feeling puffy and tired, but otherwise I generally don't have much in the way of side effects. It is kind of like the feeling you get right before you get the flu. Wipes you out, but it passes, usually within a few hours. It is worth it- especially compared to the IVIg, which gave me migraines and terrible flu-like symptoms. For now, it is the ideal treatment, because IT WORKS!!!!
Thank you all again for all your love and support. I always say this, because I really feel your positive thoughts and prayers. It is helping, so keep it coming!

Friday, April 27, 2007

A week ago tonight


I hesitated to post this, but Jason insisted. Most people say they can't see the puffiness from the steroids, but I completely don't agree! It is mostly just in my face and belly- and is wayyy more pronounced when I eat potato chips or anything else even resembling the taste of salt. heehee. One slice of pizza and my eyes practially swell shut from the fluid retention.
Jason arrived home, much to our pleasure, a few days early last week. Here are the kiddos and I in one of our many gifts from Japan. We are so happy to have him back home- even if things are still kind of reeling from all these treatments, drugs and trips to Boston.

Thursday, April 26, 2007

Lots to say

Hi everyone- I feel like there is lots to say- but I am kind of out of energy to discuss it. Just a little tired today. Yesterday I had my 4th in what is going to turn out to be 5 exchanges. As you might remember, I was hoping to only have one. I have been able to stay pretty up most of the time, but I am kind of drained today. Hey, it happens to the best of us.

We had a little trouble getting to my veins yesterday- that is the first time I have ever had that happen, so I consider myself pretty darn lucky. I think it is fantastic that we haven't ever had an issue before. It makes me feel blessed that I don't have to have a central line to have this done whenever I need it.

There are two nurses down at St. Elizabeth's who take care of my pheresis treatments- it is a very specialized field, and they are wonderful women. Danata was running the exchange yesterday, and she didn't hesitate a second to call for someone else to run a different kind of line so we could complete the exchange. If they hadn't gotten it on the last stick, I would have ended up going home and coming back for another treatment on another day. It is a testiment to how good she is that she called someone who works more often with the other lines, rather than just to keep fishing. I am grateful to have both her and Janice taking care of me on a regular basis.
The big thing is that I am feeling much better and that I will be having one more exchange, problably on Saturday morning.

We have to wait to make sure my arms are up for the fifth treatment- my blood levels are bouncing right back, but my arms are pretty bruised and we don't want me to get down there and then not be able to do the treatment. I also have a cold, so we it isn't a good idea to go ahead if I am not feeling up to it. If I have a fever the 5th is off- until I am better. I am following all the instructions, not lifting anything at all and icing- and now heating my arms to help "plump them up". The hardest thing about it, other than the discomfort, is trying to tell little Thomas (who isn't even 2 yet) that I can't pick him up. When he asks, I just sit down on the floor with him and give lots of hugs. He is a real snuggler, so he seems pretty content with that most of the time.

Katherine has been fantastic through all of this. She just seems to think it is totally normal for me to be spending all this time away from them in hospitals. I was thrilled out of my mind yesterday when she asked if I was going in to the hospital and I said yes. She asked if Nannie and GrandDad would be babysitting, and when I said yes, she said, "yippee!!!" It made my heart soar. It is really great that she is adjusting so well. I am proud beyond words of Katherine, Thomas, my parents and Jason for all their constant love and support over the past 2 weeks. (not to mention the past 12 years and most especially the last 3) Everyone in the family, our neighbors and friends have been beyond supportive, and I do feel the good thoughts and prayers everyone is sending. Thank you all so much. And a special thanks to cousin Margo for keeping me laughing.

It surprises me that after all these years, I can still be learning new things about the disease and about the treatments. Yesterday I was happy to hear that the reason I see so many different types of doctors down in Boston is that once Dr. Gorson orders the pheresis, I am then pretty much controlled by the hemotology/oncology unit. Makes sense, but I never thought about why I was being managed by anyone other than Dr. Gorson. Dr. Parameswaran has primarily been managing my day to day treatments, and she has been great, too. She has such a calming demeanor- and she even laughs at my jokes. Not to mention she TOTALLY knows what she is talking about. Wonderful combination. St. E's is a teaching hospital, so lots of docs come and go, but they are almost all really great. And if they aren't, heck, I am on steroids, so I just tell them that I am not thrilled with the care I am being given at the moment. This disease is too hard, and the drugs do so many crazy things to you to keep your mouth shut, I guess.

I was going to try to post some pictures of this last treatment, but I just couldn't bring myself to do it... I just don't look like myself, and I am pretty sure if I did post the one with me and Danata that she would never ever forgive me. We both look drugged. ha. The other pictures of me- my ego won't let me post. I will find some better ones to share with you all!

Thank you all again for your unending support and good thoughts.

Monday, April 23, 2007

3 Down maybe only 1 to go!!

So I wore my glasses to drive myself down to Boston today. At a stoplight I paused to look in the mirror and put to on some lip gloss.... couldn't at least one of you have told me that I am growing a mustache?!! Ha. Good ol' prednisone. At least I am not thinking about driving my car into people who cut me off in parking lots. Lemmy see- mustache or murderous thoughts? I guess mustache is the preferable choice.
So I am laughing about this with my nurse down in Boston, and she looks at me and says, "Oh no one would ever notice that. Just don't mention it. Umm, Then again, maybe you should get some bleach!" HA It was pretty hysterical. If I wasn't hooked up to the machine I would have busted a gut. I know after the last fun I had with the wax lady (the red mustache that lasted for 3 weeks was definitely NOT worth getting rid of like 10 hairs) I will never do that again!!!!

On a serious note, I have now had 3 plasma-exchanges, and I am really starting to turn the corner. Feeling very positive that the cyclosporin is going to kick in before I actually do kill anyone on the prednisone. Maybe someone should ask my family if that is true or not. But my Mom and Dad are still here, and I am pretty sure I haven't insulted anyone lately. LOL.

I did get to have a wonderful pop in visit from Guru Gorson today. He was really not expecting that I would need any more than 2 pheresis treatments, so I guess that he wanted to see me for himself. Either that or he just couldn't stay away from my bubbly personality. We are still sticking with the plan (see April 13th's entry). I should say here that it normally takes 5 plasma-exchanges to bring someone out of crisis- and I was very close to a severe crisis last week. Once I get shortness of breath, we are in pretty deep. The concept is that 5 exchanges removes approximately 90% of the anti-bodies causing my symptoms. This isn't anything you can measure- it is just what usually works for people in crisis. As I said, last time I needed 7, but I was really at my worst that time.

The only change in the plan is that in the past I have waited until the symptoms start fairly early in the morning (about 2 hours after I wake up is my general rule) to call a neuro and get some kind of treatment. I am now going to be calling the Guru as soon as I start having symptoms in the hopes that I will get in there, get some clean blood and be able to only have one or 2 treatments every month or so until the cyclosporin has had the time to prove itself. Which it will.

I am taking my bloated self to bed now. All my love to all of you. Thank you for all your good thoughts and prayers. Hugs. Claire

PS- a couple of sites that might be interesting for you:
A site with overviews of MG and all the Meds: http://www.myasthenia.org/
A site about plasma-exchange: http://www.healthline.com/galecontent/plasmapheresis

Sunday, April 22, 2007

Ups & Downs

Well, the great news is that my Blood pressure has finally started to come down. My primary care doc put me on a diuretic, so that has really helped a lot. The fact that the diuretic is working leads us to believe that the BP issue is from the prednisone, not the cyclosporin. Great news.
The other news is that I am going to go ahead and do a full course of pheresis (plasma-exchange). I have had 2- and I am responding well, as usual. Normally, 5 exchanges remove approximately 90% of the antibodies that cause my symptoms. For now we have 2 more scheduled, and we will see how I am to decide if I need another.
I will keep everyone updated.

Thursday, April 19, 2007

Happy Plasma Exchange Day

Hi Everyone. Thanks for all the positive feedback on the Blog. I haven't really had a chance to write back to all of you who have so thoughtfully taken the time to email me. Jason has the Laptop, so it is hard to sit long enough to write back to everyone. I am in the process!

Today I went down to St. Elizabeth's for a plasma-exchange. They decided after I arrived that we could do a little larger exchange, which is a great thing, as far as I am concerned. The more of these evil little anti-bodies they get out, the better. I had become pretty weak, so I was really happy to get hooked up. I really hate getting short of breath. It pretty much sucks. LOL Thankfully we have plasma-exchange available- and we know it will work.

My wonderful nurse down in Boston reminded me how bad I was last November, so it is pretty easy to keep things in perspective right now. I am home and resting comfortably with a lovely glass of merlot at the moment, rather than being in ICU. Last time I had to have 7 exchanges (I only remembered 6) and this time I had one and planned another for Saturday. I am really keeping my fingers crossed that this will keep the MG antibodies in check for a few weeks. If I need to go down once a week, though, until the Cyclosporin kicks in, that is what I will do!

Another bit of good news comes from my GP today. She said that my most recent bloodwork shows that the blood pressure issue is most likely related to the steroids, not the cyclosporin. We have started me on a diuretic to help alleviate the problem. This info is coming from the fact that my kidneys seem to be functioning really well, despite the cyclosporin.

So I stopped at the infamous CVS- people must be starting to talk about me and my pharmacist!- and picked up yet another script. Ahhh well, at least this one will help with the huge head issue. By the way, my parents went out last night and got another blood pressure cuff- if anyone is interested Brookstone has some nice ones that are really accurate. So hopefully I will be up all night long peeing. And maybe tomorrow when I wake up I will recognize the face I see in the mirror. I certainly recognize the heart and the fight I have come back to finding in the last week!

Wednesday, April 18, 2007

Wednsday April 18

The day started out well today... I thought we might be able to skip the plasma-exchange with some extra rest and ultra positive thinking.

I spent the morning with my kiddos and the wonderfully helpful folks. We started out returning the infamous blood pressure cuff to CVS- I swear that thing caused my blood pressure to skyrocket while providing me with no information what-so-ever, other than the repeating message, "error 3". Then we headed to lunch and brought the monsters home for a nice little nap.

I was so happy to be able to get out for a bit- I went and had my frizzy prednisone hair highlighted and cut to a very flattering shape around my poochie prednisone cheeks :) Remember that show, "third rock from the sun"? That is me- I am the big giant head. Incoming message from the big giant head... "steroids can make you nuts!!!" Just kidding. Kind of. This course is actually going much better than the others. I have a good attitude and I am really so hopeful that the blood pressure is from the prednisone, not the cyclosporin. This one is going to be it, folks. It is going to work.

It was wonderful to spend some time on me for a change- me that didn't include a hospital and drugs. And the haircut looks great! I will have to figure out how to post photos next.

About mid-way through my hair appointment, I realized that I was having more than just a bit of trouble talking. It was getting a bit hard to catch my breath. That is the point of no return for me, so I headed home and called down to Boston. I am going in tomorrow for a little tune-up. Keep your fingers crossed that one plasma-exchange will get me back on my way to health! If not, I will get a few more, and buy myself some more time until the increase in the cyclosporin kicks in.

Also, please keep Jason in your thoughts and prayers in his mission bringing home injured soldiers this week. Love and miss you Big!!!

Tuesday April 17th

Today was one of those wild days where all the time flew by... I had to go get my blood drawn to check on the cyclosporin levels as well as checking the levels on my kidney functions. Before we could even leave the house, the phone rang about 300 times. Then we had to get Kate to school and then Tom to sleep in the car so I could go to my GP appointment while Mom and Dad drove around keeping Thomas asleep. And then off to Katherine's parent-teacher conference that the teachers were kind enough to re-schedule because I was in the hospital last week and missed the previously rescheduled appointment. Then drop the kids and folks off at home and off to CVS to my wonderful pharmacist to get some more awesome steroids and a blood pressure cuff. It was a whirlwind day.

Of course I get home and the cuff doesn't' work... as if my blood pressure isn't high enough. I need a blood pressure cuff that doesn't work. Ha. It is actually kind of funny when you think about it. Thankfully, the kiddos were in pretty good moods, so they took a big jacuzzi tub with me and then happily trotted off to bed.

I am still processing the appointment. It was very rushed, because there was a mix-up and the wrong Claire was taken in before I was- what are the chances that there are 2 claires waiting for appointments back to back, and I am in the bathroom when they call the first one (which should have been me). I had about 20 minutes to meet my doctor. The poor woman has been following my case for almost 2 years and has yet to meet me. I have tried at least 4 times to make it in to see her, but with all the specialists, etc. I have never made it in. She was very understanding about it. It is just that when I am really bad, I am dealing with Doctors all the time- and then when I am not, I just can't fathom calling a doc for a regular checkup.

The long and short of it is that my blood pressure is still going up, so I am going in for an EKG and I am to monitor my blood pressure 3 times a day. I will probably end up going on some kind of med for it. The hope is that the pressure is rising from the steroids and/or the IVIg not from the cyclosporin. I am also going in for a DEXA scan to check my bones for osteoporosis from the pretencion. We really had almost no time to talk, so I will be going back in to chat further with her. The plan was for me to head in on Thursday for the EKG, but I have been taking a quick turn for the worse, so I will be headed to Boston on Thursday for a plasma exchange instead.
So Friday will be the EKG.

Sunday, April 15, 2007

Update Friday the 13th

Hey everyone.

I have finally decided to do something about keeping everyone informed about my health without getting on the phone with each and every one of my dear friends and family. I absolutely must start off by saying thank you to all of you for all your thoughts and prayers over all these years. I completely believe that I have felt your good thoughts over the years, and that it has helped immeasurably. I am hoping that keeping this log will get everyone the details that you all deserve and need to hear while keeping me from talking about Myasthenia Gravis 24-7.

As most of you know, the past 3 years have been extremely difficult. Before the kiddos, we kind of just led our lives and had this crazy disease to "mix it up a little bit". It was difficult and scary at times, but nothing like it has been recently. I am not planning to make this a big vent session for me, but I do want to be honest. I have been through just about every drug available to use for MG, and none of them have done what they needed to do without major side effects. I am sure in later postings I will go futher into this, but right now, I just want to get the information out there about my most recent appointment down in Boston with my neurological guru, Dr. Gorson.

To sum it up briefly, I have taken Imuran (twice), CellCept and now Cyclosporin. I also have been through dozens of courses of plasma-exchange and Intravenous Immune Globulin (IVIg). I don't even want to count how many times I have taken massive doses of Prednisone. I also take Mestinon every 4 hours while I am awake. The long and short of it is that there is nothing that keeps me from getting into a crisis situation if I get a little cold or one of the kids doesn't sleep for a night or two. That doesn't include any physical or psychological stress that any normal human being faces on a regular basis.

Last November we faced the worst crisis I have ever experienced. I went through 6 plasma-exchanges, combined with the used of steroids and the introduction of cyclosporin. Since then I have been going into Exeter Hospital about every 2-3 weeks for IVIg while weaning off of prednisone. I was fairly stable until about a month ago, when I was forced to re-introduce the steroids at 6o mg a day (huge dose for my size). In the past 2 weeks I have been through 5 IVIg treaments- unfortunately, the drug just isn't working the way it did in the past.

At the moment, I am decreasing the steroids while increasing the Cyclosporin. We have just increased the dose to 150 mg twice daily, which is the ideal for my weight. There is still lots of room for me to increase the dose, provided the side effects don't become too bothersome or dangerous. Guru Gorson has recommended decreasing the prednisone by 5 mg every2 weeks. I would have liked to go down by 10 mg bi-weekly, but I am going to do my best to follow my doctor's excellent advice and wait the 6-13 weeks for the higher dose of cyclosporin to kick in. There are several other drugs I am taking to combat the really fun stuff that prednisone can do to you in high doses- and I am confident that I am going to manage the decrease the way he recommended.

If I should get into any trouble while we are waiting to see how miraculous the cyclosporin is going to be, I will be heading down to Boston for more plasma-exchanges, rather than continuing to try the IVIg here in Exeter. The side effects have become pretty intense, and it doesn't quite cut the mustard- so it isn't worth doing anymore. We have tried it extensively- and the only way to come to this conclusion was to really give it a full chance. I am kind of sad that I won't really be using my local neurologist anymore, because he is a wonderful man, and a fantastic doctor. Plus the nurses in both Short-Term Stay and the Endo unit here in Exeter are beyond wonderful and I have become close with several of the other cronic patients- and I will miss them. They are a huge part of why I have been able to stay so positive through these often difficult times. Exeter doesn't have plasma-exchange, and Boston is really the best place for me. It really isn't that big of a deal for me to head down there for treatments- Gorson says not to let anyone dare tell me that I can't drive myself down for treatments. I have a proven track record with this, and I handle the exchanges remarkably well.

Gorson and I are hopeful that this drug will work well for me. The biggest issue at the moment is that my blood pressure has been rising- I have an appointment with my primary doc on Tuesday to address that and a few other minor side effects that can be caused by cyclosporin. The blood pressure thing might not be that big of a deal- both prednisone and IVIg can cause the same issue, so it might not even be related to the new drug. There is another side effect that is bothersome, but not seriously problematic. The drug can cause the hands and feet to have tingling sensations and there is an odd feeling concerning temperature- it is kind of like the feeling that one gets after being out in the cold for a long time. Other than that, my renal functions need to be closely monitored, but so far all my levels are looking good. The excellent thing about cyclosporin is that it can be measured quantitatively- I have my blood drawn regularly, and once the level reaches a certain number, we will know if the drug is working or not. These are not big deals- but I know some of you want details, and this is it :)

I have filled most of you in on the Cytoxan, which is the drug many websites call "the last resort" drug for Myasthenics. This sounds scary, but it really isn't nearly as bad as it sounds. It is chemotherapy, but it is given in very low levels, and I would be monitored very closely. That being said, we have decided to hold off on this until my cyclosporin levels have reached the optimum level. Doc Gorson was very positive about the Cytoxan, though. He has used it quite extensively in patients with MS, and he is very confident about using it in my case if the cyclosporin doesn't do what it needs to. Plus he mentioned that there are a few other drugs that are out there and on the horizon that can also be used if the Cytoxan doesn't help either.

Overall, this is all very good news- I hope that comes across through all this medical mumbo-jumbo. Sorry if this is too many details for some of you. Please feel free to check in on the blog anytime- I will be updating it as I get more information. Both Jason and I are feeling extremely positive about the current plan of action. We have a plan, and it is a very solid one.

Again, Thank you to all of you for your thoughts and prayers over the years, and particularly to those of you who have been so helpful and wonderful over the past weeks.