Frame of Love

I admit it.  I'm officially a gadget girl. 

I didn't realize this until Jeannine pointed it out to me. I love my iPod. I love my digital camera. I love my TiVo. I love my stereo. I love my Apple computer. I love my adjustable bed. 

And usually, I'm not really a 'thing' girl. So, it's kind of funny. I'm not quite sure when, why or how this happened, except that I love things that, in theory, simplify my life (TiVo), make things more accessible (iPod vs. CDs), make connecting to others more possible (computer), or make my life more comfortable (adjustable bed).

Oh and did I mention my electric toothbrush?! Sensitive, bleeding gums be gone!

The only problem with my gadget fascination is that I am pretty much inept at operating them and I very much dislike reading directions.  I also get very frustrated when things don't work properly (which is often if you bring an iPod into the mix). 

Oh how I miss you Loralea! Every time I would get something new in college that required reading directions, Loralea would read the directions to me while I followed each step. We were an excellent team!

My latest gadget fascination is a 10 inch digital picture frame on which I have loaded pictures of everyone and everything I love. I have photos of my friends and family, photos of their children, photos of Hillary Clinton when she was here, photos of Davidson basketball, photos of me with Wynton Marsalis.  I also loaded on photos of all sorts of flowers and scenery around our home and from drives we've taken. Oh, and a few pictures of Asher are on the frame too. :) Just a few though (Haha).

I am completely in awe of this thing! It's my favorite form of entertainment right now.

I love, love, love having photos of everyone and everything all in ONE place running on a perpetual slideshow. 

The last time I made a collage frame was over five years ago. Otherwise since then, I've done little to print and frame photos. My friends Meredith and Marla are each in one of my collages holding their babies who are now five (almost six!) and four years old, respectively! They've grown a touch since then, I think! 

The frame has wonderful picture quality and is big enough for me to lie in bed and just watch when I don't feel well. (Or any time for that matter). Right now, I'm looking at a picture of the valley we live in.

It's super easy to use. Any time I take photos or friends and family email or post photos on Facebook, I can put them into iPhoto and just 'drag and drop' them onto the frame while it is plugged into my computer using a USB cable.

The one unfortunate discovery that I made while transferring the photos from my computer to the frame was that a bunch of pictures seem to have 'gone missing', which I assume happened during the transfer of photos from my old computer to my new one. I didn't do the transfer and will have to check on this, as I'm not so good with this stuff. I can only do the basics. Thankfully, Rebekah was here the day the frame arrived and got it set up for me. I would never have figured out how to do that!

I don't know which gadget I like better now...TiVo? iPod? Adjustable bed? Digital photo frame? Apple computer? Really hard call. :)

But, I love what Maxine calls my 'Frame of Love'--seeing pictures of everyone I love makes me smile! Sometimes, when I am feeling a little lonely or sad, I just look over at the picture frame and it's a guaranteed smile-maker.

In the photo above Loralea's daughter, Kaylea, is showing off her applesauce-eating skills. With a fork! :) 

I hope this new gadget will help me to keep more current photos in sight rather than just sitting on my computer or in Facebook albums.

Oh, and if I don't have a great picture of you or your kiddos yet...you might want to get one to me right quick! :) 

Here's to Fridays! :)

Blessings,

Emily

Photo:  My new digital photo frame with a picture of Kaylea on the screen. So, I originally wrote this post 12 days ago--but, I'm still loving my picture frame just as much! 

Hummus Extravaganzas with Marcy

Here's to you Marcy! Happy THIRTIETH!

I can't wait for another Hummus Extravanganza!

Meet my friend Marcy! Our favorite thing is having lunch together--and it must always consist of the following items: 

• tea (hot or cold)
• my mom's homemade hummus
• roasted red peppers (Marcy has me totally hooked on these now!)
• bagels (mine is gluten-free) 
• LOTS and LOTS of other assorted veggies such as cucumbers, spinach, green peppers, carrots, red peppers, etc. 
• dark chocolate to top off the meal

These items make up what we call a Hummus Extravaganza! 

We try to have lunch together once a month--but it is so much harder to say we will do than actually be able to do, given her schedule and my symptoms. Plus, she has a one hour commute.

Marcy came  into my life in a very cool way! When my mom was getting ready to retire, Marcy's husband interviewed for my mom's position and took the job. Marcy and Nick needed to come to town to house hunt, so Mom invited them to stay with us. We had never met Marcy before, but Marcy and I connected immediately.

For her--she was moving to a new town where she didn't yet know anyone. For me--I had been too sick to meet new people. So, we both found each other at the perfect time. Plus, we have so many similarities and interests. Let's just say we never run out of things to talk about.

After that first meeting, Marcy and I started planning lunch dates and we continue to do so one and a half years later as often as we are able (which is much less frequently than we would like). 

The last thing I ever expected from my mom's retirement was to become close friends with the wife of the person who took her position! Marcy and I always have a great story to tell about how we met.

Our visits are, as Marcy says: just what the doctor ordered...food for the tummy and food for the soul. 

Thanks for your friendship Marcy...here's wishing you a FANTABULOUS 30th! Hope this decade is all that and a bag of chips (plus tax)! 

Blessings,

Em

Photos:  Two of our Hummus Extravaganzas together in 2008.

Lyme Log: Plans and Progress

Recently I posted about the four fronts we are fighting medically. So far I have updated on one front: the Autonomic Nervous System issues. I said that I would continue to update on each front. So, today it is time for an update on the world of Lyme. If you are confused by the treatment, the progress, and all that jazz...I hope this post will help to answer some of your questions. 

What medications am I taking for Lyme disease, what kind of doses do I take, and what does each one do exactly?

As you can see from the pictures, I'm on a lot of medications. Four of them are specifically related to the Lyme treatments. My poor Mom hates doing pill packs, so she tries to do as many weeks worth as possible to avoid having to do the chore too soon again! I feel badly that she has to do this chore, but I just can't sit up to do it yet.

The Lyme meds:

Bicillin:  Bicillin is an antibiotic (basically a long-acting penicillin) given by injection. It comes in syringes with 1.2 million units of medication. I am currently receiving one third (or 400,000 units) weekly. Bicillin stays in the body up to one month at a time. I chose the Bicillin for several reasons and have been taking it since April of 2008. Bicillin targets the muscles, joints and many organs including the heart.

When I talk about 'shot day' or crashing after my shot, I am referring to my Bicillin injections. I would like to be able to increase this medication, but I still get so incredibly sick after my shots. It's crazy how different I can feel from one day to the next. I usually get a shot on Mondays or Tuesdays.

Zithromax:  Another antibiotic. We added this antibiotic in last fall. Zithromax targets the Central Nervous System and can be helpful for targeting symptoms such as cognitive problems, difficulty sleeping and depression and anxiety.

I am currently taking Zithromax (250 mg) two times a week. It stays in the body for up to two weeks. I started at 1/2 tablet per week and just increased to two tablets weekly (one on Sunday and one on Thursday). 

Plaquenil:  This a very old medication often typically used in patients with autoimmune diseases. However, it is also used in patients with Lyme disease to deal with several aspects of the disease. It can help with pain. It is also thought to work synergistically with some of the antibiotics. It may also help with other tick-borne illnesses.

Currently, I am taking 1/2 of a tablet (100 mg) twice a week, on Sundays and Thursdays along with the Zithromax.

Malarone: If you have been or are going to a country where malaria is prevalent you just might know about this drug. It is an anti-malarial medication. In Lyme patients it is used to treat another tick-borne illness called Babesia. As I have discussed in earlier posts we do not know for certain whether or not I have Babesia, but we are treating me as if I do. 

Most Lyme patients are typically infected with more than one tick-borne illness--not just Lyme disease. We try to use a variety of medications and antibiotics that will treat me for all possible tick-borne illnesses. Many of the antibiotics do not target Babesia, so it is important to add another medication into the mix.

I am taking the pediatric dose of Malarone, which is 1/4 of the amount in the adult dose. I take one tablet daily.

This may sound like a lot of medications. But in fact, it is a very small amount when compared to what is typically used to treat Lyme disease. We would like to be more aggressive with the amounts I take, but my ANS does not tolerate it. So we are going as quickly as we can without causing me to have to stop treatment.

Currently, I am focusing on increasing the Zithromax. Since adding in another dose per week I have definitely been feeling worse and the midodrine has not been as effective. (We may have to tweak that medicine now also.). I am glad I went on my two mini shopping trips before I increased the Zith!

After my last phone consult with Dr. Lyme at the end of January, we decided on the following plan:

1. Increase the Zithromax to 250 mg TWICE/week
2. Increase the Plaqeunil to 1/2 tablet every other day
3. Increase the Bicillin to 600,000 units (1/2 of the full dose)/week.

I am starting with the Zithromax because I feel that I want to target the CNS symptoms of sleep, depression/anxiety, problems with concentration.

I have to admit that since adding in the Zithromax I'm a little more down because I don't get the same 'break' that I used to get on the weekends between shots. Now, I'm starting to feel sicker over the weekends than I had been feeling. Also, we can expect that the Zithromax may cause me to herx in ways that stir up the symptoms it is trying to treat--so that could mean problems with sleep, concentration, anxiety or depression.

Have I made any progress? 

This is always a very, very, very difficult question to answer. With the combination of the midodrine and the Lyme treatment, I am finally able to say that yes, I am making progress slowly but surely.

When Mom and I watched the movie Under Our Skin, one of the patients profiled said that it was not until three years into his treatment that he really started to see progress. That is about exactly when I began to notice changes--so I found his story very reassuring. 

One reason that it is so difficult to judge progress is because as soon as I reach a plateau or a point where I am not getting so sick from the medications, that is a sign that I need to push ahead with higher doses so that we can continue to kill off the Lyme as much and as quickly as possible. So, as soon as I catch a little break, it's time to forge ahead with more treatment.

What sort of changes have I noticed?

I am starting to really notice some changes in my body which I think, are in large part, due to the bicillin b/c my muscles are much less tight and sore, my neck pain is improving (I especially noticed this when I was able to play with baby David during his visit), I no longer have trigger points that bother me at night, and I am able to tolerate massage much more than ever before in areas that previously would have created an ANS flare (neck, back, spine). The improvements in neck pain have made a big change in quality of life--but still have a LONG ways to go.

When B, C, and D were here I made a comment one night at dinner asking if my mom had noticed that I hadn't been complaining of neck pain at all. She sighed a big sigh of relief and said 'Let's keep it that way! Knock on wood.' All of us--me, Mom, Britt, and Carrie--reached for the table to knock on it. David watched us intently and tried his darndest to imitate us--knocking on his plastic high chair!

Often times I would wake up early in the morning and toss and turn until I got up because of the trigger points on my hips and shoulders. First, the hip pain went away. Now, just in the last few months the shoulder pain has subsided. I no longer find myself waking up from the trigger points or unable to get back to sleep because of them. 

I would just keep switching sides hoping to get comfortable and I no longer have to do that. 

I would even wake up with my ears hurting! This made no sense to me (and still doesn't). All I know is that between my ears, shoulders, hips and neck hurting I was always uncomfortable. My ears don't hurt anymore--outside or inside! I can lie on them comfortably and I can wear earplugs without pain now.

Interestingly I have also noticed that I no longer feel the need or urge to crack my neck, back and hip as much as I used to. This is a huge relief to those around me, especially Mom. It's really horrible sounding--I've been doing it since high school and it just got increasingly worse over the years. I have read that people with Lyme disease are 'crackers' and often crack their necks and backs a lot. I would wake up needing to crack all of these things right away--and would do so many, many times throughout the day as the pressure would build up and I would need to do so to get relief.

I still crack my neck and back, but rarely my hip. And I crack my back and neck much, much, much less frequently! Yeah!

My neck pain continues to be my most frustrating issue in the pain department. I still need to use both ice and heat, and cannot lie on my side or sit in very many positions comfortably.

During massages, my muscles feel completely different than they did a year ago. I will write more about this in a post on massage! :)

When I doubt whether the Lyme treatment is working or if Lyme is the correct diagnosis, these changes help confirm our decisions. There is no other way to explain why, after all of these years, these symptoms have finally changed and improved so much. The ANS treatments would not in any way change my pain or muscle tightness. 

It is also impossible to know how much the ANS symptoms have improved as a result of the Lyme treatment. We don't know if I would have responded as well to the midodrine had I tried it even a year ago. The fact that I do not have the ANS problems from massage that I used to have is also telling.

The changes are in some ways big, and in some ways small. They are big in the sense that my body does feel very different, but they feel so small in the sense that I have so far to go and they have not resulted in a major change in functioning. All I know is that they are changes in the right direction.

How long will treatment last?

This is the million dollar question. If we had an answer, it would make things a lot easier! I'd know where and when this marathon was going to end. 

In short, as long as we seem to be making progress or at least maintaining the progress we have made, we will continue treatment. 

So far, I have been doing treatment for a little under three years. I started in January of 2006, and had to take a little break because I got so sick initially. Since restarting antibiotics in early spring of 2006, I have not stopped treatment. (This is a good thing!) 

Many people with Lyme disease require years of treatment. I'm not trying to be dramatic or negative here, just realistic and honest. I also am trying to frame where I am at in the treatment now with how long it can take to improve. It may be necessary to use antibiotics or other treatments throughout my entire life. This is an unknown quantity. And I have to try very hard to focus on the now.

I hope that this blog post has helped to clarify what has increasingly become a very confusing medical journey (just look at those pill packs!!!). 

Blessings,

Emily

P.S.  A note about embedded links in my blog.  Thanks to my friend, Sarah, whom I just reconnected with through Facebook and is a fellow PWD and classmate I now know how to embed links in my blog posts! Yeah! So, anytime you see a hot link you can click on it to get more information. In this post I have embedded links to previous posts about the Bicillin, Zithromax, midodrine, etc. Hopefully this will make reading my blog a bit easier for you. This way when you think: What is midodrine again? Or what is a herx again? you'll be able to click on the word and go to a previous post on the topic.

Also, Sarah's blogs are listed on the right-hand side of my blog page--Team Coco and Mayday Productions. They are fantastic, powerful, and also fun (her service dog is Coco and a perfect photo subject).

Photos:  Pill packs. Yes, I take this many pills a day. It's getting out of control. We can barely fit the meds in the packs anymore. My mom likes to do as many  weeks as possible when she gets to doing this chore!

A New Bedroom!

Lately, I've been spending a lot of time making decisions about my new bedroom. I haven't yet posted about this exciting happening...so here it goes! In a few weeks, the room above which currently serves as my mom's study will become my new bedroom!

Many you may remember that in the Fall of 2007, I emailed Oprah and her decorator, Nate, asking for a room makeover. Many of you wrote letters on my behalf asking that I be granted this wish.  It's difficult for me to even go back now and read the blog posts I wrote during that time. (If you type in Oprah and Nate in the search box in the top right hand corner of my blog, you will be able to see all of the posts I wrote during that time, or just click on the hot links in this paragraph.) After all of that I also wrote to Oprah asking her to do a show on chronic illness.

Well, Nate never knocked on my door during that time that I wanted so badly for him to do so. But Nate or no Nate, I am finally getting my new bedroom and I am so very excited! I'm in a much better mindset than I was when I wrote those 2007 posts, and I've even been well enough to go do a little shopping for things.

Instead of Nate, I have a team of family and friends (including Carrie and Britt who helped out big time when they were here visiting, and even Miss Alexandra) helping me choose fabrics, paint colors and bedding. (I have super cute pictures of Miss Alexandra over here this summer looking at the fabrics and paint colors but they somehow got lost in the transfer to my new computer. :() I also admit to hiring a decorating to get me started on the process--she chose the furniture that would fit in the space, fabric swatches to give me ideas, and paint colors.

In the end, the timing of my new room seems to have worked out perfectly. We originally planned to get new furniture and paint for my 30th birthday--now it's looking like we'll accomplish this venture closer to my 33rd and a half birthday. 

The planning for my new bedroom has been in process for over three years now and the project is finally coming to fruition. I just can't believe how excited I am about it! The hardest part for me is getting over the guilt of the gift of this new room when the economy is so bad.  I have been very blessed to be able to use some money that my dad has set aside just for this purpose--money that he received when my grandmother died. I know that she would want me to have this room. 

On Friday, I ordered my 'grown up' furniture from a store that makes all of its furniture locally. Finally, I will be replacing my 'little girl' furniture that I have had since the age of six. It is particle board and complete with cute little flowers on it. 

The last time I did my bedroom was when I moved back home in the fall of 2001 after living in an apartment with Jeannine for a year. I was 25. I still wanted a 'princess room' at that time--and I am so ready for a much more adult room. 

This time around, I will actually be moving my bedroom to a different room (the room that was my original bedroom growing up) which is slightly larger than the bedroom I am in now and also has two windows instead of one. 

The major reason for doing this is to create a completely new psychic space. Many people who see my bedroom now say they love it. And they love the color lavendar on the walls. The room is probably still lovely. But I no longer enjoy it at all. In this space, I was the sickest I have ever been (during 2005 and 2006). There is still a stain on the ceiling from a time when my dad accidentally shot a syringe full of saline solution up towards the ceiling. Since I lie in bed a lot on my back--I see that stain every night. 

Maybe if I didn't spend so many hours a day in my bedroom or wasn't mostly homebound, I wouldn't be so tired this space. Because my bedroom is the room in which I spend the most time, our focus has been on creating a new space for me there. I am so ready not to have purple walls!

My new room is all about simplicity and a restful, calming, healing atmosphere. I want it to have a sense of life about it while also having a Zen-like quality. Nothing from my old room will move into my new room (except for a couple of things). Oh, and my clothing of course!

I have settled on yellows, greens and browns. I chose a yellow paint color--that manages to be warm and soothing, rather than cool and bright like many yellows are. Yellow makes me feel like I am surrounded by healing light, by God's light, and by sunshine. Green and brown make me feel close to nature, grounded, centered, and peaceful. 

I just need to find a color to paint the ceiling because I refuse to spend so much time staring up at a white ceiling anymore!

I have been searching for bedding for months. I'm relieved to see that the brown and aquas that dominate the bedding these days may be changing a bit in 2009. I did not want a seventies feel to my room! I'm still haunted by the orange, brown and gold of the seventies. We had it in our house until the 1990s. Ugh! 

As of tonight, I think I found my bedding! Finally. 

What makes me feel like the timing of the new bedroom worked out in the end is that I am in a place right now where I can make some of the decisions for myself and do some of the shopping (with a lot of help). Most of the time, others do the shopping, and often the decision-making for me. This is great, helpful, wonderful, and kind. My mom is a fantastic shopper when it comes to things like clothes and just about anything I need. Neither of us enjoys shopping very much, and I find it especially difficult to find clothes or bedding online--I want to be able to see the colors and feel the textures.

But when it comes to my new bedroom, it has been incredibly special and empowering to be able to make decisions on my own and to be able to actually do some of the shopping at the stores. Two weekends ago, I was able to go to the furniture store with Mom, Dad and Abbie to choose my furniture. I finalized my decisions and ordered it yesterday. 

Last weekend, Mom took me on quick trips to Bed, Bath and Beyond and Macy's. It was the first time I have been to the mall or to a big store in years. I can't say I enjoyed it or that I want to go shopping again anytime soon (unless it's bedroom related!), but I did it. I was so excited just to be able to do it. I could not have done those things even two months ago. I couldn't believe how empowered and excited I felt and continue to feel by the whole process.

My furniture will arrive four to five weeks from now. We have a lot to do before then! Mom has been working very hard to clean out her study (which will be my new bedroom) so that I can move in there. We still need to finalize paint colors, find a painter, order a new door, find a handyman, order lighting, and so much more. 

I admit that preparing for my new room has taken away from my time to do other things. But it has also been one of the biggest and most exciting things I have had to look forward to in a very, very long time. I also really enjoy the creative process of it, and creating something that is mine. I can't remember having a long-term goal and something to look forward to like this in a very long time. 

Thanks for letting me share my joy with you!

Blessings,

Emily

Photos: Mom's study...soon to be my bedroom. That's a LOT of books about sociology!

Our Valentine's Day...

We had a very nice Valentine's Day today!

Here are the pictures of the day...

Some very delicious homemade chocolate covered strawberries to top off a wonderful dinner. Yum!

A goofy picture of Mom and I together. We have so very few pictures of the two of us together. I was hoping to catch Jeannine and have her zip over from four houses down to take a couple of pictures of Mom and I, but she wasn't home. So I attempted to hold the camera out in front of me and snap a picture of the two of us. It didn't work so well (yes, I should read the directions and learn how to use the timer...), but I still like this photo of the two of us together. We were dressed in the exact same outfit today--pants and sweater! 

 I have so few pictures of Mom compared to everyone else, so we each snapped pictures of each other. I love this one of her. I think she has fewer wrinkles than I do!

And then she got a picture of me! :) Finally a new picture of me for my blog profile in which I don't look soooo pale. Note the pin I am wearing (hard to see), but it has a little string on it that, when pulled, makes a little image of two people kissing pop up. I looked at the back of the pin today just out of curiosity to see if it might have a copyright date on it. It did. 1980. I have been wearing the same Valentine's Day pin for 29 years?! :) I still love it!

Asher wouldn't pose for the camera tonight but he is also wearing his Valentine's Day 'outfit' (a bow), and here he is enjoying his Valentine's Day toy. Squeak, squeak!

Mom and I went on an outing this afternoon just to spend some time together. I haven't been shopping in a very long time because I don't enjoy it and don't feel well enough to do it. Now that I am on the midodrine, though, we were able to go for a little shopping trip (very short) to look at some bedding choices for my new bedroom. We went to two stores but didn't find anything. Why is everything aqua and brown right now?! Still it felt like 'old times' a little bit to go out together, even for a little while.

After my nap, we had our dinner and and chocolate covered strawberries. I finished off the evening later with some salty popcorn and some of the Westminster Dog Show (I'm still watching it all these days later!).

Hope you had Valentine's Day surrounded by those you love. 

Blessings,

Emily

Happy Valentine's Day!

The more I think about it,

the more I realize there is nothing more artistic

than to love others.

--Vincent van Gogh--

Thank you to each and every one of you who teach me daily how to be more loving, to love more fully, and to be loved. I love you.

Happy Valentine's Day from

Emily and Asher!

Photo:  Asher hanging out in the den. I couldn't find him the other night--and here he had settled himself in on the pull-out sofa bed in there! He knows the three pieces of furniture he is allowed on--the pull-out sofa, the ottoman in the living room, and my bed! He makes good use of the ottoman and my bed, but rarely is he in the den by himself without me. Somehow, it must have seemed extra-comfy with that pillow sitting there? I don't know. And yes, we wash all of the bed linens before you arrive for a visit, and no, he doesn't shed. :)

Mostly Medical: Magic Midodrine

Much has been going on medically as of late. Right now, I would like to share about a new medication which has been life changing. I'm calling it Magic Midodrine because many of us on my support forum say that we are 'searching for our Magic Pill.'

As I've mentioned earlier, I am taking something to raise my blood pressure. It is called midodrine.

For those of you who prefer the more technical information on medications, here it is straight from one of Dr. ANS's handouts.

MIDODRINE:

Brand Name: ProAmatine

Type of Drug:  Midodrine is classified as an alpha-agonist, or vasoconstrictor drug.  Unlike the stimulant drugs, it is not thought to have direct central nervous system effects.

Action:  The main effects of midodrine are to cause blood vessels to tighten, thereby reducing the amount of blood that pools in the abdomen and legs, shifting that blood volume into the central circulation where we want it to be. The drug has been used in thousands of individuals around the world, and appears to be well-tolerated.



After almost two months of working to adjust my dose we seem to have found a dosage that is working quite well. We are still continuing to do a bit more tweaking here and there with the medication. At first I found that I had improvements during the daytime, but would 'crash out' at night and be up sick with low blood pressure. Now my blood pressure seems to be better regulated at night also. For a while I was even wearing compression hose at night, which caused another batch of undesirable side effects. I take the medication 4 times/day at 3 1/2 hour intervals. Timing of the doses and not missing doses is crucial.

I tried this medication many years ago under the supervision of another doctor. It had no effect. Dr. ANS decided to give it another shot because I have tried almost all of the options available to me. I am convinced that this medication worked this time around because I had so much better monitoring of dosing. Too bad I didn't discover this sooner! I have really had no side effects from this medication other than to feel a bit 'wired' on it mentally and physically. My mind always races anyways, and this seems to add to that a bit!

Two questions I often hear are "How low is your blood pressure?" or "How low does your blood pressure go at night?" Mostly, we evaluate what to do with medications based on symptoms more than on the blood pressure reading itself. After years of realizing my readings didn't match how I felt, I mostly stopped taking my blood pressure except when I really feel it does need to be monitored.

The answer to these questions is not easy to answer because for many people blood pressure readings such as mine would be 'normal' and cause NO symptoms of feeling sick or risk of fainting.  Readings for me can range from about 120/75 to 89/50. I usually run about 90/60. 

The issue is that, for me, even when my readings seem like a hypertensive person's dream reading (108/72 for example) this is considered low. 

Why? Because I am still incredibly symptomatic. My body feels like it is in combat all of the time. It's fighting constantly to keep my blood pressure from falling (and causing me to faint), so I feel my heart pounding forcefully or racing. I feel the blood draining from my head and chest the more fatigued I become. I have difficulty concentrating and focusing. I have no stamina. I am extremely pale because, literally, there isn't much blood going where it should be going. I cannot sleep because my body is fighting so hard to keep my blood pressure up. 

What I have learned is that my blood pressure readings, while sometimes seemingly 'perfect', are in fact likely to be falsely elevated. In other words, my body is fighting so hard to keep it from crashing that is why I have so many symptoms.  For me 89/52 is scarily low and leaves me feeling incredibly, incredibly ill. This is what was happening night after night the past few months. I would be up all night long with low blood pressure, fight through a day, and then start the cycle over again. I was physically and emotionally exhausted. And that is when I began to also sink deeper into a dark night of the soul.

Before Britt, Carrie and David arrived, Dr. ANS worked long and hard with me to make this medication work. I was very scared that because it worked during the day, but my blood pressure crashed at night, we weren't going to be able to make it work. But, he did it! I'm honestly often in tears wondering what I would do without a doctor who gives me this much individual attention. We emailed back and forth for weeks trying to tweak the doses.

I knew something was changing when baby David was here. I felt better than I ever have for company and I joyfully did the chicken dance with the little man and helped bathe him. I still had some difficulty with nights and sleep, but overall did better than I ever could have imagined.

Now that the dosing is even more fine-tuned, I have this to say:

When my alarm goes off at 11:30 (yes, I know, sad that I have to set it for that!), I think, "I'm sooo tired. I can't wake up yet!" But I take the midodrine, lie back down and can FEEL it kick in and I'm ready to get up. (On days after my shot, this is not the case and even the midodrine isn't enough to combat the Herxheimer reaction).

I notice that my body is no longer using so much energy feeling like it is 'in combat'. While I don't feel 'alive' in my body the way I did before getting sick, I do find that I want to move around more. I don't feel like I am carrying one hundred pounds extra weight with each step I take. I've had more focus to blog. I have now done two flights of stairs and started going for tiny little walks again. I have had visitors and been more able to actually ENJOY having them here rather than struggling through it all. Today, Jeannine came over and we painted our fingernails! Normally I would have been too sick to sit up long enough to do this. I have much more upright time (standing is still very difficult, but sitting is certainly improving). 

My blood pressure is no longer crashing at night, so I wake up more ready to start a day. Sleep is still not my best area--and it takes at least 2 or 3 hours for my body to transition from being awake to sleeping, even with a lot of medications.

I have been attributing all of my lack of motivation to do things to depression. Now I realize that was part of the equation, but not all of it. Having Britt, Carrie and David here began, for me, a 'coming out of the dark' emotionally. But I also realize that so much of what has been going on is literally being and feeling too sick to do anything or to enjoy anything. Since starting the midodrine, my motivation has changed dramatically and my mood has also. It's amazing what a little blood to the brain can do, isn't it? And, with the midodrine I even have just a touch of color in my face that I didn't have before (we're talking about a change from gray to just pale--I'm not sure if I could say I've seen pink in my cheeks yet!)

I wanted to write about the midodrine before I head for my next bicillin shot on Tuesday because when I wake up on Wednesday I will wonder if all of this could possibly be true? If I could possibly have these days of spring?

As with most things, it's difficult for me to 'rest' in this new state of improvement. I still have so very, very far to go. And things can slide backwards so quickly that I'm almost afraid to talk about how well this medication is working. Will it last? Will it keep working? Will the more difficult Lyme regimen make these spring days go away again? All I know is that on Friday, for the first time in a very long time, I said out loud to Facebook that I felt happy. And that is a word that has long been lacking from my vocabulary when it comes to describing how I feel.

One of our goals with the midodrine is to continue to monitor it as I increase the Lyme medications (another blog! :)). As I increase the Lyme medications, I will likely have increased ANS symptoms and will need to support my ANS more. 

Hopefully my 'medical posts' are helping to clarify what I think has become a confusing mess of medications and illnesses to most folks! 

Happy Monday! 

Blessings,

Emily

Photos:  Tulips that mom bought to brighten my day. They reminded me of the 'touch of spring' that I have felt recently, and especially the last three days.

A Note About The Chicken Dance Video...

My cousin Dana previewed my blog with video content...

I forgot to mention that there is now a Playlist on my blog with some songs I love.

The problem is that this is going to be playing while you are trying to listen to the video.

So....

Just go to the bottom of the blog (scroll ALL the way down)...

Click on the Pause thingamabobber and you're all set to go!

Enjoy the video--even if it is sideways.

David Does The Chicken Dance

For the life of me I cannot figure out how to make this video right side up. I should have just filmed this great moment with the camera held horizontally, rather than vertically. Why doesn't the rotate button work in iPhoto for movies? Hmph.

Speaking of Hmph...Are you feeling that way about hump day today? If so, I highly recommend you watch this video.

It's only ONE MINUTE AND TWENTY FOUR SECONDS, but I guarantee you'll be smiling the rest of the day. Or for me, the rest of the week, month, year, or until I get another David fix.

Every night at bath time, David's dad (Sam) sings the chicken dance song while he takes David's clothes off. Carrie did this with David the first two nights and we all laughed hysterically.

The third night, David let me hold him while Britt, Mom and I tried to wiggle David out of his clothes and sing to him. That was when I got the picture I posted in the first blog where he and I are smiling big time. It was one of my absolute favorite moments.

Are you wondering what in the world the chicken dance is? I didn't know it either (or I've just forgotten). It's a midwestern tradition--a song and dance done at many weddings. Britt can do the whole dance and sing the whole song. A true midwesterner. Given the number of midwestern weddings I've been to, I suppose I should remember the chicken dance. But I don't. My only excuse is that I haven't been to a midwestern wedding in over ten years.

Hope you enjoy--even if the video is sideways. Just turn your monitor sideways or something! :) It'll make it all the more goofy.

Here's to hump day, whatever you're doing. I'll be in bed herxing all day. That's definitely worth a "Hmph."

Here's to singing the chicken dance all day long!

Blessings,

Emily

P.S. If you're a subscriber remember to click on the 'hot link' in your email (anything in blue, such as the title of my blog or the title of this post), so that you can view the video content.

Photo (above): Carrie and David doing the chicken dance.

Video (below): David and Carrie get ready for bath time...David is not shy about getting naked in front of all these women! Jeannine stopped over too (that's her laugh in the background!)