Well, the weekend was fabulous. BF got a great deal from TravelZoo and we got an incredible room for a steal. The hotel itself was absolutely gorgeous. It's a historic site that was accurately redone in 2007 to show of its Victorian roots. The bottom floor was breathtaking, with sitting areas inside, porches with rocking chairs and lounges around the exteriors, walls full of old pictures, displays of old guest logs including President James Buchanan, who made Bedford Springs his summer White House. There were two pools; an outdoor pool with little cabanas and an indoor pool filled with water from the seven mineral springs on the property. The spa also uses the mineral spring water in their hot tub and cold plunge.
The room itself was beautiful. It had a great big king size bed with a feather bed, down comforter, and down pillows. It was like sleeping on a cloud. The room had two french doors that opened up to a porch that had two rocking chairs and a little table. The porch was shared with five or six other rooms and looked out over their beautiful lawn and gardens.
Saturday morning I awoke in the cloud of a bed to fresh orange juice and coffee that was left at our door (gratis!). It was quite the pick-me-up and we were out the door to breakfast in no time. The free breakfast buffet included made-to-order omelettes, scrambled eggs, bacon, ham hocks, sausage, french toast, oatmeal, pastries, cereal, fresh fruit, and a selection of chesses. It was awesome. I had toast with blackberry preserves, bacon, cantaloupe, and a spinach, mushroom and cheddar cheese omelette. It was a great start to our day.
When we were planning our trip, we thought that Fallingwater, the Frank Lloyd Wright house in Western Pennsylvania, was about forty minutes from our hotel. It turned out to be a bit more than twice that, but it was a beautiful day and I love driving around when it's just BF and I (not that I ever get to drive; he a control freak). So we got to Fallingwater in time for the 12:00 tour and really enjoyed it. The pictures that are on the website don't even do it justice. The views of the waterfalls running under the house from the terraces are spectacular. If you have the opportunity, I highly recommend the tour. Of course the house was built in the 1930's as a private residence, so it's not very handicapped accessible. We scaled several sets of stairs in our climb around what is essentially a four-story house. Luckily they had a van to take guests back to the visitor's center if you couldn't make the walk back, which I couldn't.
After our equally enjoyable drive back to the resort, we went to a program called "Cooking with the Chef" which we, especially BF who is very into cooking, were really looking forward to. It wasn't quite what we expected though. We thought be actually be cooking with the chef. Silly us, apparently. The chef selected one person from our group to serve as sous chef while the rest of us drank champagne and watched. They made sea scallops in a brandy sauce finished with butter, tuna tartar on a crouton, and jumbo lump crab cakes, that were literally falling apart there was so much crab in them, with a miso vinaigrette dressing. The perks of getting such a nice, free lunch of seafood and champagne almost made up for the fact that we didn't get to cook anything, but BF was definitely still disappointed.
After lunch we laid around the room for about an hour before my facial. When you schedule, the spa asks you to come up to an hour before your treatment so that you can take advantage of their hot mineral baths, a very sweet perk. Our room was directly above the spa, so I took the elevator down, checked in, and was escorted into the ladies half of the spa. There I was given a robe and flip flops and instructed on how to use the baths and steam and that there were showers and toiletries there for my convenience. I changed into my bathing suit, had a nice shower with their signature walnut apricot body scrub, enjoyed the steam room, then a dip in the hot mineral bath, followed by a quick plunge into the cold mineral bath, and when I say cold, you have to remember that I'd just come out of a soak in a hot tub at about 102 degrees. The water was paralyzingly cold. My first instinct was to get the hell out, but I figured I'd try it and totally submerged myself for a few seconds.
After the hot-cold-hot-cold, I decided that I was done with the baths, put on my robe, grabbed my book, and went into the relaxation room to wait for the aesthetician. I'm reading "Eat, Pray, Love" a book that my mom's been trying to get me to read for a while and that I'm really liking. I'm in the part of the book where the main character/author was studying at an ashram in India, and it was the perfect pre-facial reading material.
The facial itself was fabulous. Not knowing what would be right for my skin, I left it up to the aesthetician. She used rose oils because my skin is apparently dry and sensitive. After the 50-minute treatment, I felt as if my feet were no longer firmly attached to the ground. I floated back to the room where BF was waiting to tell me how fabulous I looked and smelled.
Then we had a late dinner in the tavern at the resort. Good food, good conversation. Mostly. There should be a rule about talking about your real-life while on vacation. Real-life dilemmas can really screw up a beautiful evening. BF and I got to talking about whether we might just move back in to the house that he and his wife still technically own (as the person who moved in and was supposed to take over their mortgage hasn't been able to get a mortgage and is essentially renting the property without a lease). I said that I was alright with that, but that I was uncomfortable with my position legally, that I didn't feel comfortable living in and contributing to building a home in a house that would be entirely his, to which I would have to claim should we split up. He doesn't see why that would make me uncomfortable about my position, but he also doesn't understand why I want to get married. I often feel like my standing in our life is defined by my health, like he's waiting to see if this transplant works before he makes any definite commitment to me. That adds even more anxiety to my current situation because I feel that not only does my future health rest upon this procedure succeeding, but so does my relationship. He says he just can't go on doing everything, by himself, forever. He's a bit of a drama queen with that stuff, because he doesn't do everything by himself, I do help, just not consistently, but if he were a single guy with a son part-time, he would have just about as much to do and he would be responsible for every last bit of it. Money also factors into it. He also makes about seven times the salary the I make in a year, so as far as making a mortgage payment, yeah, he's the one paying. This, as a reason for me not being a "full partner", drives me crazy, especially since when I met him, before we were dating, when we were only friends, I let him know that my greatest ambition in life was to be a mom and that I wanted to stay home with my kids and raise them as my primary occupation. So I brought up a slew of issues from "I want a cut" to "how well am I actually going to have to be before you accept it and can be happy with our relationship".
Not the best conversation for a date let alone a romantic getaway. He ended the coversation rather abruptly and said he needed to get out of the restaurant. We walked back to our room in silence, stopping a couple times along the way to look at the pictures and displays of the hotel's history. By the time we got back to the room, it was after ten and we had to be up early the next day. We got into some comfy clothes, read a bit, watched some TV, and went to sleep.
I slept terribly that night. I was tossing and turning and at one point I actually woke up choking, I had either inhaled saliva or stomach acid, but either way it was pretty awful.
The next morning we woke up to the same orange juice and coffee and had another nice breakfast down at the buffet. Then we parted ways, I had a massage and he went to pack our bags. I didn't do the whole bath thing again before my massage, but after a nice long massage, with a masseur that was very good about being aware of my fibromyalgia, I took a nice hot shower using all of the spa's fabulous soaps and such. Then I went back to the room, where BF had everything ready to go, and we left.
We had planned on doing something along the way on the drive home, but I was in pretty bad pain after all of the walking at Fallingwater and the rough sleep the night before, so we just came home. As soon as we got home I laid down and napped for about two hours. While I was napping he went to pick up the little guy. LM was so sweet when he came home, we snuggled for almost an hour before it was time for him to go to bed. I love it when he comes home, it just feels like somethings missing when we don't have him here.
So I've been trying to feel better over the last couple days, I've been pretty stiff. The LM was sick yesterday, so I spent a lot of my day tending to him, some kind of stomach bug or something. Today, I imploded. I was walking like a little old lady, so I spent most of my time laying on the couch. Hopefully, tomorrow will be better for it.
I'm still bummed about our fight Saturday night. I hate when nothing gets resolved or even understood better. It's just a frustrating situation. I want him to say that he loves me and that he wants to spend the rest of his life with me no matter what. I want to feel like if I stay sick, or if I get better then worse, that I don't have to worry about losing him. I want him to be one of those partners who stays with their sick spouse no matter what, I want that "in sickness and in health" and I don't know how to resolve within myself that he's not going to give that to me, not now at least. It's depressing in the one place in my life that I expect to be the anthesis of depressing. I wish I could just say "well fuck him" if that's what it comes to, but I know that I'll be crushed. On the other hand, I don't know that he'd ever actually leave me, he might just resent me more. And I really wish I was strong enough to not put up with being resented over being chronically ill, but it would take a lot to get me to that point. I love him too damn much. I guess that's why it hurts so much.
My mom had suggested that we go to Jamaica for five days with her and my brother at the end of the month, but I'll either be on fertility drugs or having an egg retrieval that week, so it didn't seem like a great idea. Bf still wanted to do something fun before the hell begins though and his ex wife wanted to keep the little man for an extra day this weekend so that they could take a little trip. Unfortunately, their trip fell through due to her boyfriend's uncoopperative ex wife, but she's still keeping the little guy so that we can keep our plans and she can have him for Mother's Day.
We had been considering going to Baltimore and the National Aquarium, but then BF found this place. He said he wanted to do something for me for Mother's Day that was less activity centric, more of a getaway. I love this man.
So we've got a spa suite for tonight and tomorrow night. Tomorrow we're going to tour Fallingwater, the Frank Lloyd Wright house out here. After that, I have a mineral bath and facial scheduled. Then Sunday morning, I have another mineral bath and a massage before we go home. We don't have anything else specifically planned, but I'm sure we'll check out the local scene, whatever scene there is, or maybe we'll just lounge about in the pools, hot tubs, and glorious nature.
Well I hope all you moms have a great day on Sunday and everyone else remember to remind your mom just how awesome she is!
Mobile Blogging from here.
Yeah, I know you don't get to see them on my face, but the shape of all three are pretty similar and all three look good, I just can't decide which one is the best and which color I want. So that's where you come in. Here they are, what do you think?
One day I post three times and then a week without anything. Nothing to post really. I'm in a holding pattern. Waiting to do this IVF crap. My body isn't on board with that one, so it looks like we're going to have to shoot me full of drugs just to get things started. The problem being that I was on Depo-Provera for so long that I stopped having a monthly cycle and it takes some time to get going again once you're off of the shot. So it looks like they're going to have to give me another drug, called Prometrium, to give me a "fake period" (no ovulation involved) to basically get me back to Day 1 of a normal cycle and then we can start the follicle stimulating hormones.
My pulmonologist is onboard with the transplant. She agreed with my conclusion that with both my pulmonary pressures down and my diffusing capacity down, i.e. my breathing is getting worse, but my hypertension is getting better, it must be the pulmonary fibrosis that is causing most of the problems here, so the scleroderma is the major factor. That just reinforces the idea that SCT is the best option for me. SCT can't fix the pulmonary hypertension, so if that was out of control, we could only hope to see minimal improvement with the transplant. Since the scleroderma seems to be the key culprit and the PAH is under control, then if the SCT does what it should and kicks the scleroderma's ass, I should be in much better shape.
Still don't know if my lungs are ever going to be better than they are now. I've spoken with doctors and people who've undergone chemo for scleroderma with pulmonary fibrosis and the verdict seems to be that they can stop the disease from getting worse, but fibrosis is a buildup of scar tissue and they can't get rid of that. The PAH is still a big question mark. I haven't found anyone who has had SCT for scleroderma with PAH, so there's really no way to know. Some cases of PAH are caused by things like Fen Phen, but when the person stops doing the drug, the disease doesn't stop advancing. Other types of PAH are secondary to things like tumors or clotting disorders and when the underlying diseases are cured, the PAH goes away. So the question is, how will scleroderma react? Up until now SCT there wasn't anything out there that could "cure" scleroderma. High dose chemo might put it into remission, but not forever. So now I've got a brand new, experimental treatment, but even if this does cure the scleroderma, I don't really know what life's going to be like after that cure.
And that's just the medical side of things. I really don't know what life as a whole is going to be like post-transplant. I've never been well as an adult. I've never had the opportunity to work without waking up every morning and taking stock of my symptoms. I've never been able to make plans for next week or next month (or sometimes even tomorrow) without hesitation. I can't wait to get on a bike again, to run without worrying that I won't walk for a week, to get down on the floor and play with the little man without thinking about how I'm going to make it back up.
It's going to be like learning to live again. It's exciting, but it's also really scary. I'm hoping that I'll psychologically be able to jump back into life, that I won't hesitate. I'm really hoping to regain my social life and actually have some friends again. The big one that is hanging over my head is having a real job for essentially the first time. But when that really worries me I just think back to November of 2005. I was sick, my best friend had died of a drug overdose two months before, I was knee deep in end-of-the-semester insanity, carrying a full course load of five classes, I was working almost forty hours a week, and my only real coworker in the administrative end of the business, my boss, had just been fired without a replacement. I thought I was going to break down, failing the business and school while destroying my health. Instead I excelled. I got straight A's, all of the orders went out, and with the exception of a couple level 10 migraine headaches (I missed out on both Thanksgiving and Christmas Eve that year), my health remained pretty stable and I made it in to work regularly.
I don't know why I eternally doubt myself so much. Under pressure, when it really comes down to it, I always expect to fail and I usually come out on top. I'm a worrier I guess. Having so little control over my body also feeds that one. When I took my capstone class at Temple, we had to spend the semester writing a thesis paper on post-WWII Europe. A lot of the class was going back and forth to see the professor and discuss our ideas and spending time in the library doing research. I was just too sick to make it downtown much that semester. I missed half of my meetings and got so far behind that though I managed to crank out thirty pages on the collapse of communism in the Eastern Bloc, they were pretty much crap and combined with the percentage of the grade that came from just being there when you were supposed to, I managed to get a D- and it cost me my double major. So I'm hoping that when my body isn't such a big factor in the equation and I can rely solely on my intelligence and will power to get me through I can once again have some faith in my ability to make what I want happen.
So much for having nothing to post, right? You should see me in real life. It’s easy to understand when BF forgets I even said most of what I say. I can talk about nothing for hours.
I've been a royal mess. I've been crying at everything. I've been irritable, weepy, and just sad. I'm hoping that I'm premenstrual. If not I'm just an insane bitch.
It's not as if I have nothing to be upset about. All of this stem cell crap is really freaking heavy. BF doesn't get it. He says that I'm getting what I wanted and I should be happy and excited that it's happening. He says I'm just wasting time be being upset or worrying about the outcome. He just doesn't get it and apparently nothing I can say is going to make him get it.
It's isolating and incredibly frustrating. I feel like I have all these people around me, but I'm all alone with the reality of all of this.
I just hope I get my damn period this week. Then I can go from PMS to artificially injecting myself with fertility drugs that will do god-knows-what to my mood.
Ugh. I just want to get this crap started already so that I don't have to think about it and be scared/anxious/excited/nervous all of the time. I won't have to feel guilty about not going out or doing the laundry or any of the myriad other things that BF wants me to do now and then gets frustrated with me when I can't. I'll look sick. For some reason, whether they know that you're sick or not, people are reluctant to give you permission to be sick unless you look it. You don't get freedom from the eye rolling and sighs that imply that you really could be doing whatever it is they want you to do, but you just won't. Well, after the chemo there will be no denying that I look sick. Maybe then I can get a break from feeling like a massive disappointment.
I will still be posting her regularly, it's just that there are some things I don't want the world to know, and I find the blog format the easiest for disseminating that kind of information rather than making/taking a million calls/emails. I'm sure you all understand.
So, of course, I'd like to extend an invitation to those of you who read here if you want to follow that kind of stuff. Just shoot me an email, if I don't already know who you are let me know, that kind of thing. It is on the personal side, so if you don't regularly follow my blog or know me in real life, please don't be offended if I don't invite you to read.
I had some trouble with the question for this week and when I finally was able to answer this evening, it just felt like it belonged here.
This week's question was - What helps you cope with scleroderma?
I've been thinking about this one since C. posted it. My first instinct was "Not very well." Honestly, this disease has taken over my life. I'm still a very young woman. I just finished college. I was planning on starting a career and a family. I had an active social life. Now, I have no social life besides my family. I have no job. I have such bad joint pain, fatigue and shortness of breath that there are many days that I don't even get off of the couch. I may not ever have children or be able to start that career for which I studied so long and so hard.
Hope is how I'm coping right now. Hope that I might be close to a cure, hope that life might be normal, whatever that is, hope that I'll be able to have kids, hope that I can be a productive member of society again.
I write my blog. That helps. It gives me the freedom to let it all out.
My family...well, I feel like I have to cushion all of this for them. My disease is active and aggressive. They're always telling me how great I look and I hate having a negative answer to "how are you doing?" every time someone asks, so I lie.
[Ed. Note: Yep, some of the family reads this, but some things are easier to type than to say.]
But the best way for me to cope is to be as active and aggressive in fighting this disease as it is in destroying my body. Over the last year things have turned from bothersome and limiting to life-threatening and inhibiting. For a while I was depressed and defeated. Then I got angry, really pissed off. At the doctors who weren't doing enough, at life for sticking me with this disease, angry at my age, at my body.
Let me say that being angry is a great motivator. I decided to take my treatment into my own hands. I found doctors who were willing to be appropriately aggressive and now I'm able to fight with all I am, to work as much as possible to reverse this disease's hold on my life. So that's how I best cope, I fight. I'm having a stem cell transplant, I'm doing IVF to preserve my fertility, and I'm doing my best to stay aggressive.
If that fight fails, well I really don't know how I'll cope. Pulmonary hypertension is fatal and scleroderma has induced an aggressive form of interstitial fibrosis. If I lose this fight I won't be coping with living with a chronic disease, I'll be coping with dying of a terminal disease and that's not something I'm ready to think about yet.
That said, it's like a roller coaster over here.
Somehow in all of my neuroticism and insanity over the last few weeks, I managed to completely loose track of my cycle. Today is Day 23. Holy shit. That means that *if* I get my period this week, I'll start the IVF cycle immediately. Nervous excitement abounds! I'm going to have a blood test tomorrow or the next day to see if I ovulated this month, I just can't wait another five to ten days to see if it's going to happen. I don't have much patience for waiting for these kinds of things. I was the girl in high school that was on the pill, but still took a pregnancy test as soon as my period was a couple days late. I need to know!
I said I was neurotic, right? But we (BF and I) went in and had a consult with the nurse who explained the whole procedure and I'm full of nervous excitement. This is really going to happen!
So if I did ovulate, my next cycle should start between the 25th and 30th and then the two week circus begins. I’ll first start with Gonal-F (follicle stimulating hormone) from Day 1 until egg retrieval, which should be around Day 14. I'll also start with Lovenox on Day 1 to replace my Coumadin so that if we have to do emergency surgery for any reason I'll be okay and so that when they do the egg retrieval I can be taken off of the anticoagulants quickly. BF and I will both have to take a course of antibiotics for the first week just to make sure I don't have any infections and that he doesn't have one that he could pass to me. I'll start Cetrotide midway through the cycle to suppress natural ovulation. Throughout the entire cycle I will be getting regular (read: constant) blood work and transvaginal ultrasounds to monitor my hormone levels and the progression of my follicle growth. Once they have reached the ideal point where they're nearly ready, I'll give myself a shot of Lupron. This will give my eggs the final shot of hormones that they'll need to fully mature. Exactly thirty-five hours after the Lupron shot, I'll have the egg retrieval and whatever eggs they can collect will then be fertilized with BF's sperm. Not exactly the romantic way I'd imagined we'd conceived, but nothing else in this life has gone as expected, so I'm learning to just roll with it.
If I don't get my period this month, they will make me get my period next month with a drug called Prometrium. Once I have that fake period, my hormone levels will be at the right place to start a cycle and it will go along just like if I had menstruated normally.
So I'm very, very excited. I hadn't thought how far I was into this cycle before we went into this visit today and to realize that we're possibly this close is really exciting. Not only because of what we're doing, but because I'm actually doing something. And it was also very nice to find out that the protocol that they have me on consists entirely of drugs that are injected subcutaneously, so I can give myself all of them.
One another subject entirely, LM had his third birthday celebration (dinner and cake at my mom's) tonight and then got to sleep over at his pseudo-grandma's house. I'm glad that they like each other so much. I have a VQ scan scheduled for 8:30 am tomorrow morning and it's hard enough to get myself out of the house without him, so it's nice to be able to just pick him up when I'm done.
Alright, well the day has just caught up with me very suddenly and I've become slow and achy, so I'll sign off for tonight.
I hope the mood swings haven't been too insane and I hope you'll all hang on for the next few months’ worth!
First, I see that I've got a few more readers coming by these days. Good stuff, but none of you are commenting. So, how about de-lurking for a purpose?
I'm trying to amass a reading list for my upcoming confinement. My profile should give you a general sense of my taste in books - not very literary, mostly sci-fi/fantasy/horror or just weird. I also like historical fiction and light non-fiction.
I'd love to hear whose visiting along with any book suggestions or any other suggestions on what I might want to take with me. So far I want to bring a sleep mask, dvd player, movies, iPod, notecards, some board games, video games, beading stuff...and that's about it. I'm going to be in-patient for a month and I want it to be as homey as possible, but I'm not sure what else to bring, so your suggestions are welcome.
And, of course, if you don't happen to have a suggestion, no sweat, but I still would like to know who you are and where you're from!
Alright, I'm looking forward to hearing from you all!
He is truly becoming a little man. He's getting taller. He's getting more personality. His ability to reason and make deductions based on what he already knows is astounding at times. Every day with him is interesting and fulfilling and challenging.
I had no idea what I was getting into when I moved in with BF and LM. LM was just starting to talk and walk. It was so easy. It was so different. Then, it was about keeping him occupied, feeding him, changing him and making sure he got enough sleep.
It's a whole new ballgame now and I really love it. He's got such excellent linguistic skills that it's really a joy to talk to him now, to actually have conversations. And he wants to learn things and teaching is pretty much my thing, so I'm really loving that. We had a whole mini-lesson the other day about who the men on our coins are and what they did and why they were important. I was thrilled and he really seemed to enjoy it.
I love him to death, but I like him more all the time. I'm so glad that he's a part of my life and that I'm lucky enough to be a part of his. Parenting is just so rewarding. I always knew that I wanted to be a mom, but I had no idea of what it would actually be like. And at this point I really do feel like a mom and just to boost my self-confidence in that area, LM told his mom that I'm one of his parents. He definitely favors his dad when he's here, but I've been noticing more and more that he really does treat me like a mom.
* * *
The birthday party turned out pretty well. We decided to do a combination party this year with LM's mom, so the little guy got to have a whole lot of his favorite people around, all at once. It's the first time we've ever all gotten together like that and it went really well. We rented space at Smith Memorial Playhouse, a very cool place. If you live in the Philadelphia area and have kids under ten, you need to check it out. It's free to play on the playground and they have the coolest, most unique playground equipment I've ever seen.
Getting there was absolutely insane though. It was a great zoo day in addition to a Phillies game, so traffic inched all of the way down I-76. All of us, hosts and guests, were late. His poor grandparents didn't get there until the party was practivcally over.
We had fun though. The train cake came out pretty well (and I was feeling well enough to frost and decorate it), but on the way down we had to stop a little too short and the train fell on it's side. We mostly salvaged it, so it wasn't a total loss.
LM enjoyed his gifts and we just got finished reading on of his new "Martha Speaks" books, which he loves. It was a really good day on the whole and it's good to have had this as a sort of ice breaker. It's the first time that both sides of LM's family have been in the same room and I hope it leads to more of these joint holidays/events. It was good for him and I think it's good for all of us too. I was particularly happy about how things went with LM's aunt. Things have been historically tense and unfriendly between the two of us, but today we both made an effort to put it behind us and not only co-exist, but actually be nice to one another. I'm hopeful that this can be the way things are from here on out. I like their family, the past has just strained relations. Maybe enough time has passed that they can see me for who I really am rather than how I came into their lives.
Anyway, it was a good day, exhausting, but good. I've been laying on the couch since we got home and I'll be going to sleep very soon. It's good to have an exhausting day every once in a while.