Wedded Bliss!

September 18, 2009 was a gorgeous day in Portland, Oregon, and it was a wonderful day for Bryan and I. I was feeling pretty good and probably going on adrenaline when I got up at 5:45 am to start getting ready for our big day. I was excited with some butterflies in my stomach. Bryan called to see how I was feeling and tell me he loved me. Half an hour later we were getting last minute things in order before our marriage ceremony. I did fine all the way through all of that...I'm sure the adrenaline helped.

After our marriage ceremony, we met each of our guests, most of whom offered us hugs along with their congratulations. That's where I ran into some problems. By the time I was in the Bride's room prepping for pictures, I felt almost too weak to stand up. I have such a hard time doing anything that requires me to lift my arms...it wears me out fast. Luckily, my wonderful friends wrangled up a wheelchair for me to use for the two hours we were taking formal photographs. While I didn't want any pictures of it, we did have it behind the scenes for me to sit down and rest, and also allowed me to save my energy for the rest of the day ahead. I've had a hard time with using wheelchairs and scooters, but I am a practical person, and I know that for right now, there are moments where they are a necessity.

To save my strength and energy further, instead of changing out of my gown for our luncheon, (at an ITALIAN restaurant, no less...) I opted to remain in the white ball gown and take my chances. Some very kind servers helped me to creatively cover myself with an off-white tablecloth so that I could enjoy the lasagna I had ordered for lunch. Don't worry, no major catastrophes, and the lasagna was great!

After the luncheon and before the photos prior to our reception, we grabbed a quick nap on the couch at the church. I have learned to trust my body and to listen to it. When I have trouble listening, luckily I am surrounded by people who will help me out by telling me what to do. Bryan is one of those people, and there were a couple others this day that "forced" me to take a nap. It was good for me. I've found that frequent naps allow me to be more productive.

Another thing that helps me is to avoid standing for long periods of time. We decided that during our reception I would sit while we were greeting guests, and instead of mingling, we would invite people to come and mingle with us where we were. We found a taller chair that was the appropriate height, and Bryan stood beside me all night. It worked beautifully. Other than cutting the cake, our first dance, and dancing with my dad, I was able to sit the whole time.

As a result of all the little things we did throughout the day to conserve my strength, I even felt good enough to dance with Bryan and our friends for a bit (who could resist dancing when "Dancing Queen" is playing??) towards the end of the evening.

At the hotel, I was obviously so exhausted that Bryan had to carry me into the room....wait. I guess that's really more a rite of passage, huh? All joking aside, to us it had been a perfect day. For a few short moments on a beautiful, early-fall day in September, we got to forget all about Lyme disease and have the perfect life! Now begins the real journey, and I am so happy to have Bryan by my side.

Engaged!

Bryan proposed to me on July 27th, and I am so excited to marry him. The whole time we've been dating, I've known (and he's known) that I have Lyme disease. He's seen me during some pretty low moments, but I wasn't sure if he really understood the full implication of everything that Lyme entailed, and what it would mean for us physically, emotionally and financially if we were to get married. I felt like he should fully understand all of that before making such an important decision. While visiting my family in Coeur d'Alene, Idaho right after his family reunion, I asked he and my dad to watch the movie Under Our Skin with me. It's an excellent documentary that lays out the complexity, controversy and difficulty surrounding Lyme disease. It brings a lot of things out into the bright light of day, and deals with some of the stark realities of this debilitating illness.

I remember crying as I explained to him why I wanted him to watch it. Dealing with chronic illness is difficult, and would be even more difficult while trying to make all the necessary life adjustments that happen for any newlywed couple. I am currently unable to work, and most days I'm not able to contribute very much in terms of everyday tasks, cleaning or even cooking. He wants to attend dental school with all the time and effort that will entail. I wanted him to be aware of all the implications that this illness could have for us in our life together. In spite of my thorough explanations, and after watching the movie, to my complete and total surprise he proposed to me six hours later. While visiting with me on the phone the next morning, my dad remarked that I would never have to wonder if Bryan really loved me. I am amazed and humbled that he is willing and able to look past all of this! More than that, I am so glad that he is the wonderful man that he is, and that I will have a partner in this battle from here on out!

Going On Vacation??

Yesterday my boyfriend Bryan invited me to come with him to his family's annual reunion, a week-long retreat at a lake in Washington State. I am very excited about the opportunity to go with him, and it sounds like so much fun, but I am really nervous and a little scared about how I will feel (physically) while I'm there, and how I'm going to take all my medications in an inconspicuous way when we're all together in such close quarters.

We've been on weekend trips with friends in the past, but never for a week, and never with his family. I'm nervous about what he'll think (and what they'll think) if I'm too tired to do the types of fun, outdoorsy things that people do at reunions. What if I get really sick, or have a reaction to my meds? I'm going to go, of course. But I've got to figure out how best to address a lot of these concerns in my own mind. Being outdoors and trying to maintain normalcy in my life has really helped me to cope with everything that has happened this year, but going places is a bit more complicated given my "normal" right now.

Bryan is wonderful about everything, and has never given me any reason to worry about being tired or slow...he's very patient and always helpful. So the reality is, I really have no reason to worry about the family reunion. Bryan and I will have fun, no matter how I am feeling or what I can or can't do. I consider myself very blessed to have him in my life right now.

Anytime you are facing major challenges in life, it tends to become very clear who your true friends are. I'm really glad to have been blessed with such amazing and life-long friends that have really rallied around me to provide me with support. Bryan would be at the top of the list. When all of this is said and done, I want to be a better, more compassionate and understanding person, so that hopefully I can provide others with the love, support and hope that I have felt from the people in my life right now.

The Latest

I had another doctor's appointment in Seattle on Monday. It went well, but it was discouraging in some ways. I had been feeling really well (more energy, less aches, no numbness in my arm & leg) for almost 5 weeks. Three weeks ago I finished my initial prescription of Mepron, and after three weeks off the medication, many of my symptoms have returned. It was wonderful to have a reprieve and feel better for awhile, but it is really discouraging to have things coming back.

My doctor was very encouraged that I had responded so well to that particular cocktail of antibiotics and other medications. Because she believes we are on the right track, I'm going to be doubling all of my meds, in addition to starting on a blood thinner. The latest research on Lyme shows that 80% of patients that develop chronic Lyme have a coagulation problem that prevents the medications from being fully absorbed. The blood thinners help counteract this. Last time I was in Seattle I had blood work done that confirmed this condition and so hopefully the blood thinners will make a difference as well.

It's great news that we have found the right cocktail, but doubling my doses combined with boosting absorption with blood thinners means that I will probably be a lot sicker for awhile. I was really discouraged by this, but I just have to remember that it's part of the process. I've read a lot of stories of people that respond well to medications after a month or two, but then as soon as they go off of them, the symptoms come back. This is the reasoning behind long-term antibiotic therapy.

I've read testimonial after testimonial of people that had been told by their doctor that after a month or two of treatment, they would just have to live with their remaining symptoms and ailments. In desperation, each of these people sought out the physicians who believed in long-term antibiotic therapy, and after a year or two of treatment (sometimes more) most of these people have made full recoveries. It's controversial, but the idea is that the symptoms are caused by an ongoing, chronic and active infection...and that once you finally eradicate the infection, the symptoms go away.

I'm about five months into treating the infection. While I'm very grateful to know what's going on, and to feel like I'm on the right track in terms of treatment, I have to repeatedly remind myself that it's a long process. I guess I'm a little impatient. I'm trying hard to be positive, and to focus on the good things in my life. When I feel good, I've been trying to make the most of it, which sometimes causes me to try to make up for lost time and I end up over-doing it. There's a balance and I'm trying to find it.

It's Amazing...

Just a quick post today, because I haven't put anything on here in a few weeks. I am still feeling like I've got good energy, and it's going on almost a month now that I've felt that way. I still get tired, and usually have to take a nap during the day, but I don't wake up anymore feeling like I can't get out of bed. I've also noticed that my joints are so much better, little tasks involving my hands are much easier now. I was able to chop up a bunch of potatoes last night, something that I dreaded doing a couple months ago, because it hurt to do it. I'm still having a little pain in my right foot and hand, but it's hardly noticeable compared to what it was in January. The pain in my abdomen has gone completely away as well. I also noticed the other day that the constant throbbing in my hands and feet has gone away. I'm very excited that perhaps I have turned a major corner in all of this. I'm finally feeling like maybe I'm starting to get better. I'm nervous because today is my last day on the Mepron, (anti-malarial) and I think it has done wonders for my energy...I've read that sometimes as people stop their treatment with specific medications sometimes the symptoms come back within a few weeks.

I will leave that in the hands of my capable doctor. She specializes in Lyme and other tick-borne diseases, and she's also a naturopathic doctor, so she combines prescription medications with nutritional supplements that help to keep everything in balance. I've read horror stories about people doing treatment for Lyme, because the antibiotics are so aggressive they throw everything else out of whack. I haven't had any complications from all my meds, and I think it's because she knows what kind of support my body needs right now. In addition to my prescription meds, (antibiotics, antimalarials, etc.) I also take several different probiotics, vitamin D, multivitamin, trace minerals, zinc, immune stimulants & other supplements twice a day to keep everything up. Even once I'm completely better, I will always have to make sure I'm doing things to support my immune system, since this is where Lyme does most of it's initial damage. My doctor understands this and is helping me tailor a treatment plan just for me. She is awesome, and I feel really blessed that I was able to connect with her for my treatment.

My next appointment is Monday, June 22nd. I will probably get a whole new meds regimen, and we'll see how that goes. Because I go every 8 weeks, my next appointment won't be until the end of August. It's hard to believe how quickly time is flying by...my doctor had initially told me that the first 2 to 3 months of treatment is the worst, and then you start to see steady improvement. She also said that by August we should have most of my symptoms resolved. I confess, when she said that I had a hard time believing her. But now, a little more than three and a half months into my antibiotic treatment, I'm very excited to report that all signs point to marked improvement!! 

A Not-So-Quick Update

I know this blog is probably not very interesting to most of you, but I think it's really important for me to write about all the different things I'm experiencing throughout this process, since it's so easy to forget what's been happening from one week to the next. Even just reading back over the last few posts, it's interesting to be able to recognize progress.

This week I've realized that this stuff has really affected my ability to carry on conversations...yes, I know...I'm really good at talking. If we're talking on the phone you may think I'm off my rocker in saying that, since I can still talk. :) It's not so much the talking, but the content that's a problem right now. I've always been a great conversationalist, but it's a lot harder for me right now to talk about things much beyond the days events or what might be happening tomorrow. It's hard for me to put together my thoughts and really articulate what I'm thinking. Most of you have probably noticed at one point or another that I also have difficulty finishing sentences. These are all symptoms of Lyme, and the doctor told me that the treatments would affect "higher brain function" even more for awhile, but I was hoping that I wouldn't necessarily have to deal with that.

I have also noticed that I have a hard time with word retrieval, and I get confused with what day it is, or if I had a conversation with someone earlier this morning, or last Wednesday. It's all a little disconcerting, but easier to handle since I know why it's happening, and that it's temporary. All of this is happening because the infection is in my brain, (which is why I've had balance issues for the last couple years) and as the antibiotics and my immune system kill the bugs, the whole process causes inflammation. The inflammation causes some messages to misfire, so once in awhile, information is not available when you need it.

When I was in Seattle this last time, I tried to use my ATM card, (it's for a checking account I've had for over 10 years, and I've never had a problem remembering my PIN) and for the life of me, I could not remember my PIN. I tried four different times to put it in, and couldn't get it right. The information was just not there. There was a long line of people behind me, and I was embarrassed by that and flustered about the whole situation. Luckily, I always bring an emergency credit card with me when I travel, so I just used that. That incident was really upsetting to me, but those kinds of moments are getting easier to deal with because I just tell myself that it's necessary to getting better.

In happier news, I think the Mepron and the Cortef are really helping me. I started on my second bottle of Mepron yesterday, and I have noticed substantial improvement in my energy over the last week. I have still been tired, and I still need to rest frequently, but I've been able to get so much more done compared to the last several months. So, I've taken the Mepron for about 22 or 23 days now. The doctor thought that the 2 strains of Babesia (a co-infection to Lyme that's similar to Malaria) that I have are probably contributing to the extreme fatigue that I've had, and that treating that infection and getting it out of the way would help. I think she was right, and I'm really excited about the improvement.

The rest of my antibiotics and supplements are going well, and I seem to be on the right track. I feel really blessed, because compared with others I have heard from and read about that are in my same situation, I think I'm tolerating everything really well, and that I'm actually pretty healthy given the circumstances. I had a fairly busy afternoon and evening yesterday, and I was expecting that I would probably be in bed all day today recovering. I woke up this morning feeling really good, so I'm going to try to get a few things done around the house. I have to take it easy though, so I have enough energy to get to church tomorrow. Sometimes when I feel good I have a tendency to overdo it.

A friend of mine came to visit last week and told me about another friend she has that was diagnosed with Lyme disease awhile ago. She describes it as knowing that you have a jar with a set number of marbles in it each day. The marbles represent your energy. If you want to use the marbles doing dishes and vacuuming the house, that's fine. If you want to save them so you can BBQ with friends, that's fine, too, but you probably aren't going to have enough to do both. The point is, everyday, you have to decide what you want to use your marbles for, since there is a limited supply. I thought that was a really great analogy. I am learning to pace myself for now, and eventually, when I get feeling better, I will have so much more appreciation for the gift of health and strength. You hear that phrase a lot, and it seems kind of trite most of the time when we use it. It has entirely new meaning to me because of all of this!

Oh, one more thing. I was watching Mystery Diagnosis this week on TLC. There was a guy on there that was having all these bizarre symptoms, and I was like...it sounds like he has Lyme. Well, I kept watching, and he totally did have it! It was pretty interesting. At the end they had a physician on talking about it a little bit, then they did a follow up with him. After antibiotic therapy for a year and a half, he was back to normal. Three years after his ordeal started, he said he was back to 100%. It was really encouraging to see that! I got my treadmill set up this week, and my goal for this next week is to walk everyday -- even if it's only 3 to 5 minutes. I think it will make me feel better knowing that I'm doing something. All-in-all, this has been a great week for me, and I'm very optimistic about the future.

NEXT!!

So much has been happening in my life lately as a direct result of having Lyme. So many people have told me that they think I'm being incredibly optimistic. I guess I just see it as my only choice. Of course I would rather not be dealing with all of this, but the reality is that I AM. I want to be able to get through this in the best way possible, and seeing the good things in my life throughout the process. I'm trying to be open to all the changes and embrace what's going on, so that I can move forward to the NEXT phase of my life once things have calmed down and returned to normal (or something like it.)

I went back to Seattle two weeks ago, and I've gotten new prescriptions. Right now, I'm taking the same antibiotics, (Doxycyclene, Plaquenil & Biaxin) but we added in Cortex (which stimulates the adrenals -- hopefully giving me a temporary boost of energy) and a lovely anti-malarial suspension called Mepron. It's as thick as tempra paint, and bright yellow. Very interesting...my doctor thinks that by adding in the Mepron right now, we can address the two different strains of Babesia, which is probably adding to my extreme fatigue. I'm on pediatric doses of all of the above, because my doctor says I'm "so small," which I interpret to mean SHORT...hahaha. Also, we don't want to overdo the meds and make me sicker than what I have to be!

I had an incredible burst of energy two days ago, where I was up first thing in the morning, created a budget, (my new retirement budget, heehee) cleaned my kitchen, rearranged some things in my living room, packed some boxes and made a pot roast. This was amazing, because most of the time it's all I can do to get up and do one or two quick things around the house in the entire day. I've learned, though, that when I'm feeling good, I need to take advantage of it! I've also learned not to overdo it, because sometimes I pay for all that extra energy over the next two days as my body protests over the exertion my muscles aren't used to.

Speaking of muscles, I'm in the middle of reorganizing my house, (with the help of some wonderful friends) and I'm changing my dining room into my personal gym. I'm hoping to be able to start using my treadmill again, maybe only 3 to 5 minutes a day at first, but something will be better than nothing. I'm also going to try to do some really light weight training, which hopefully will help a little bit with my muscle weakness over time. One of the most frustrating things in all of this, is that I just haven't been able to get things done the way I used to. I'm learning to rely on others for help, and I'm also learning how to let go and let things get done when they get done. It's hard though, because things seem so crazy right now! Patience, patience, patience...

Overall, I'm feeling optimistic about everything, and I've been thinking about specific goals that I want to set over the next three months so that I have something to look forward to as I start feeling better. I want to go visit my friend in South Carolina, and I'm thinking about a couple classes I would love to take if I can figure out how to do it...I would love to take the Wilton Professional Cakes class at their school in Chicago...I know it sounds crazy, but I love doing cakes. The class is only 9 days, so if I really do get feeling better (and my hands get better) in the next couple of months, I might do that before I go back to work.

Before I started SkinScience, I had wanted to get much more involved in the medical side of our industry, and I think in a few months, (when I am feeling better) it might be fun to start back into things by maybe working part time at a medical spa or with a physician. I have worked with a plastic surgeon in the past, and it might be fun to get back into that at some point. We'll see. I'm going to stay focused on future options and possibilities, and take advantage of the next six months as a time to figure all of that out. I feel blessed and grateful for where I am in my life, and that Heavenly Father is taking care of me, and has made allowances for everything that's going on right now.

This Week's Update

So, I think I'm getting worse. My fatigue has been so bad I get out of breath walking from my bedroom into my kitchen, and the weakness in my arms and legs makes them feel like they weigh 50 pounds each. I think I am feeling better about all of this than I was last week, for sure. Thank goodness that that's getting better. I am trying to remember what my doctor said about my getting worse before I get better...getting really sick means that the treatments are working! Woo Hoo!! I have another doctors appointment with my specialist in Seattle on Monday, so I may have another update at that point. 

My sister-in-law discovered a tick crawling on her two-year-old's jacket last week, during an outing only a few minutes from their house. Because they are aware of what has been going on with me, they understand the danger associated with ticks. Ticks can be found anywhere there are deer, particularly areas that get a decent amount of rainfall. For more information on how to avoid a tick bite and possible exposure to Lyme, read through my previous post, "An Ounce of Prevention." I am making it one of my personal missions to help other people avoid having to deal with what I'm going through right now. Please take a moment to read through it!

Today

I'm feeling better this week than last, but today is not a good day. :( Still, I am grateful for progress, however slight it might be. Last night my neighbor came over to check on me and she brought me a DVD about Lyme called "Under Our Skin." She had mentioned to her son that I had Lyme, and he had sent it with her for me to watch. I actually already have it, it's very good and very informative. I was really surprised that her son had it, because it seems like such an obscure topic. Anyway, if you are interested in learning more about Lyme, I would highly recommend it.

Up and Down...and Venting

So this past week I've had a hard time dealing with what's been going on. The antibiotics and other meds are definitely helping. I'm doing a lot better than I was three months ago. But it's still very much a day to day thing, and I guess the whole business of being sick (in bed sick) for the better part of six months now is starting to take it's toll.

Don't get me wrong. I'm grateful to be having better days, and to see the light at the end of the tunnel. It's just that when I have energy and minimal pain on Monday, I expect to wake up on Tuesday feeling perhaps even a little bit better than the day before. When you're recovering from a cold or the flu, that's how it usually goes, right? Right. Well, when you're dealing with chronic illness it's so discouraging to wake up the next day only to realize you're feeling way worse than you were the day before.

In the last six months I have had friends that have had the patience and thoughtfulness to come to my house or take me on outings when I am feeling ok, which has really helped me not to become depressed. Hopefully, when I start finally feeling better, I don't want to have to look back and see that I've lost out on two years of my life to being sick...I've already been dealing with this for over five years, and while I did my best to muscle through all of that, I realized that somewhere along the line I've forgotten how it feels to really feel good. Most of the time, especially if I'm concentrating on it, I can pretend that I feel ok, and make the best of the situation. But the in and out daily monotony of waking up, starting my out-of-control pill regimen, and basically laying in bed hurting all day is starting to wear on my positive attitude. 

Yesterday I got an invoice in the mail for $3100.00 for lab tests required to get a diagnosis. My insurance has refused to cover any of my treatments, so I've been paying for everything out of pocket, and so far since I was diagnosed in January, I've spent over $7,000.00 up front in cash on this...that doesn't include those lab tests. Wondering why my insurance wouldn't cover this stuff? Watch this clip. It's all a little overwhelming...but I know that somehow things will work out, they always do. The worry over finances probably only adds to my melancholy mood tonight. 

If you're wondering exactly how devastating Lyme can be, watch this short BBC Clip describing the Lyme Disease problem in Britain. Or this one, by Turn the Corner Foundation, a Lyme advocacy group dedicated to Lyme research & education.  Clearly, not getting treatment is not an option...it's a catch 22 if I ever did see one.

I am beginning to develop a lot of empathy for people who deal with devastating illnesses like cancer, and all the implications that are involved. The physical pain and symptoms are manageable most of the time; the endless medications (which make you sicker) are manageable most of the time; the financial strain is manageable most of the time. But put all of these together, combined with people's lack of understanding of Lyme (and therefore lack of sympathy or concern) in general, and at times it does seem to be an insurmountable situation.