As always, I'm not keeping up as well as promised with my blog...but here goes! A LOT seems to have happened since my last update. Aaahhh, where to start?
First, you all may remember where I was at last year at this time...on the verge of turning 30 and praying that this would be my decade for healing. Well, turning 31 was MUCH easier than turning 30! Although, I'll admit I'm still not used to being 30 something. I do feel that we have started to see progress and this just might be a decade of healing. It was a much happier birthday this year.
Because of my low energy, we spread it out over a few days! So, I go really spoiled! I felt like I turned 30 all over again, I received so much love and blessings from all of you. THANK YOU!
I recently had a long email exchange with my ANS specialist as well as a phone consult with my Lyme doctor. This upcoming week, I have a phone consult scheduled with my ANS doc.
Medication-wise--I'm working to increase the Minocycline from 2x per week to one 50mg pill every third day. I am 'holding at one pill per day' of the Malarone, while I work to increase the Minocycline. I'm still at baby doses of both, but am about to reach pill number 50 of the Mino! Yippee! And, the good news is, I'm starting to see some teeny tiny steps forward (with a few steps backwards always thrown in, of course).
Last time I wrote, I discussed how much I was struggling, so this time I wanted to share some GOOD news and some changes that I have begun to see since my last post. Finally, in about mid-August, once I reached a maintenance dose on the Minocycline of 2 doses per week and stayed there for a while, I started to see (since I finally wasn't herxing all of the time!) these little changes in my body.
I recently wrote of them to my ANS doc, and he was so excited! And thrilled with the approach that my Lyme doctor is taking with me--slow and steady. It is an incredible blessing to have these two top docs on the same page with one another.
So, here are some of the changes I am beginning to see:
CHANGES IN MY PHYSICAL BODY:
--My neck pain is gradually improving. It is less severe, aggravated a bit less easily, and easier to calm down when it does flare. It is still a constant problem and triggered easily by movement and especially by using the computer. I am more often now able to settle the flares with heat or ice, whereas before, nothing helped. A big change is also that I am beginning to feel more 'give' in my neck, so that lying on my side is becoming easier and less aggravating to my ANS! This is a big change!
--I am now able to tolerate massage! Another 'yeah'! Previously, it seemed no matter what type of body work or how gentle it was, Maxine and I could find nothing to do that did not end up making me feel worse aftewards. As I have gotten farther into the Lyme treatment, I have been able to tolerate increasing amounts of massage. I used to always just feel more neck pain, more sluggish, more foggy, more agitation, etc. Now, the massages often make me feel better, and I think that they help me to clear out the 'die-off' of the Lyme spirochetes. Since I am not able to excercise and get the blood flowing to the areas where the Lyme likes to hide out, the massage really seems to help 'clear things out'. We have noticed that all the connective tissue sites around the joints are sore and feel 'thick', and Lyme 'loves deep connective tissue', as my Lyme doc would say. We hired a new caregiver, who also happens to be a CMT (how lucky am I?), so I am able to get 2 hours of massage a week. Maxine does the upper body b/c she is most experienced with my neck issues. We have found that my neck is still 'off limits' to touch or massage, but we have been able to massage my spine and back and areas we never could before, and as time passes, I tolerate more and more. Rebekah, our caregiver, comes a different day of the week in the evenings (while my mom is teaching) and is able to massage the lower half of my body--this works so well b/c I can take a bath and have my hose off for the massage, which I have never been able to do before. It has been so amazing to really be able to tolerate, enjoy and feel healing benefits from the massage for the first time.
--I now crack my back much, much less (a big relief to all of those who have HEARD the actual cracking!). I do not know if this is a product of being able to massage around the spine or part of the Lyme process, as I know many others with Lyme are 'crackers'. My neck still cracks just as much, but we haven't been able to work there yet.
--I have started to see significant changes in sleep. I am sleeping better. It's not great, but I rarely have the nights of extreme insomnia that I used to have. I have even had some times of sleeping really well and being able to nap well also. This means that I am no longer quite as up on the news, as I no longer spend the entire night awake listening to BBC World News and NPR's morning edition! At this point, I'll take the long desired sleep! I still need a lot of medication to fall and stay asleep--both the Klonopin and Ambien.
--Overall, I think my ANS is beginning to calm down some. When I have a 'storm' or 'spell' it is not as severe and I am usually able to calm it down more quickly. I also have noticed that my forceful heartbeats, while still there, are much less powerful. I still have to work very hard to manage my schedule and how much stimulation I am exposed to (computer, phone, TV, visitors, etc), but it is definitely beginning to improve some. Symptoms are still easily triggered by both good and bad stress. I can also wait out a spell more easily or sometimes shorten it with a bit more Klonopin, whereas in the past, NOTHING would help. I would often spend much of the day unable to tolerate anything, and was only able to lie around and just feel miserable. Now, I am starting to be able to spend more time listening to music, listening to books on tape, and now I can even watch some TV (which, I'll admit is exciting! I got to watch lots of the U.S. Open Tennis and actually enjoy it. HUGE change!). I have been hoping that the farther along we get with the Lyme treatment the more improvements I will see in this department, as the over-active ANS still remains my biggest challenge. The consequences of 'overdoing' are still large and frustrating.
--I am not sure how to describe this improvement. The closest term I can use is that I am less 'hypoglycemic' than I used to be. I used to absolutely HAVE to eat every 2-3 hours and would feel very sick--nauseaus, shaky, dizzy, tachy, etc-- if I did not. Now, I have noticed, that while I still have to be very careful, I have more 'give time' in terms of how quickly I will get symptomatic, and don't get nearly as symptomatic. I do not know why this has changed.
--Overall I seem to be a bit more stable (although it is quite easy to upset the apple cart) and have a bit more stamina when things are stable ( i.e. One week I had three doctor's appts., three days in a row. I did it, and while I was tired, I did not have a major 'storm') I could not have done that even a couple of months ago. I still have many days of feeling like an absolute 'wet dishrag'.
WHAT DO THIS CHANGES REALLY MEAN IN TERMS OF MY FUNCTIONING AND QUALITY OF LIFE?
At this point these changes have not resulted in a higher level of functioning in terms of being able to do more or be upright more or leave the house, but they have translated into an improvement in the QUALITY of the time that I am awake. I do not like to use the word suffer, but I did start to feel like I spent most of my time unable to do anything but feel lousy. Now, I am at least usually able to listen to some music, listen to a book on tape, or watch a little tv. I hope these changes are the building blocks to more changes.
I do not feel as sick as I did, but I still feel lousy all of the time. I have a long ways to go before these changes translate into really feeling 'human' I think.
WHAT CONTINUE TO BE MY BIGGEST CHALLENGES, PHYSICALLY...
One thing that is still incredibly frustrating is that I have had no improvement in the cognitive department--computer time, focus, reading, knitting are still virtually non-existent. I squeeze what I can in on 'good days'. It's hard to know though if the herxing is also causing some of these problems on top of what I already experience. I still never wake up or have moments when I feel 'clear-headed' or 'fresh', I always feel foggy and unfocused.
I still am incredibly pale every day.
The overstimulation of my ANS remains, as always, my biggest problem and the biggest barrier for me in terms of sleep, activities, etc. The consequences of 'overdoing' are frustrating. For example, a visit with a friend, while an absolute JOY for me, often results in hours of waiting for my sysem to calm back down--forceful heartbeats, hear 'flip flops', sweats, pallor, etc.
I also have a symptom that is quite bothersome, causing me to feel a sort of 'air hunger' when I talk, especially when I am on the phone. Of course, I could try talking less, but that's pretty impossible coming from me! :)
As always, I struggle the most with the fatigue, exhaustion and basically a whole body that requires a great deal of careful monitoring and rarely cooperates!
WHAT ARE THE DOCTORS SAYING ABOUT THIS?
Both of my specialists are encouraged and excited about the changes. We haven't had movement in the 'forward direction' for a LONG time. So, however small the changes, we will take them!
In my last discussion with my Lyme doctor, he felt good about our pace and my progress. As always, he reminded me that I have been sick for a very long time, and healing will also take time. I am very prepared for this. He told me it would be one to two years before I really started feeling better, but honestly, I am prepared for longer than that. He reminded me that we have many more options and medications to try--which is so different than where we were at before the Lyme treatment--we were out of options which was very difficult.
In his email to me, my ANS doc was also incredibly encouraged by the changes. He felt that any attempt to be more aggressive in the approach to my treatment would result in a setback, rather than my turtle steps forward.
In response to my struggles with my ANS, etc. he feels that as the Lyme treatment progresses, these issues will continue to improve and settle down. So, we are not making any changes in my medication for the ANS issues. As always, he reminded me that 'patience is the key'.
I will update more on his side of things after our conversation next week, when I hope to get a better feel for things, and answers to some of the questions both I am looking for and many of you have asked me.
HOW I'M FEELING ABOUT ALL OF THIS EMOTIONALLY AND SPIRITUALLY...
I am really hoping this is the right path! I feel much more at peace than I have in the 8 1/2 years that I have been sick. The challenge, is, as always, to stay patient, and let things unfold at their own pace. I asked for a beaded bracelet for my birthday to wear with my Medic Alert tag that says 'Patience!' so I have another daily reminder.
I remember writing my ANS doc around this time last year, as I approached my 30th birthday and how bad of a place I was in spiritually, emotionally and physically. I feel like I am in a much better place in all respects now! After the gallbladder surgery, I really felt that most of the time I was just feeling so incredibly sick all the time, I was really struggling and felt that I was really suffering. (Yesterday, at my check up with my primary care doc he rated me as a 5 out of 100 on a wellness scale post-surgery!) I was also so obsessed with trying to figure out what I was missing or doing wrong. Now, I am much more able to accept this path and be at peace with it. One thing that has helped a LOT (which may seem backwards) is having both of my specialists recognize how sick I really am and not minimize it. This has helped me to let go and know that I have two great docs really paying attention to the reality of the situation and helping me as best they can. It's actually made me feel more hopeful, rather than less! This has helped me to have more peace, contentment and patience with where I am. I'll admit that it is hard sometimes how slowly things are moving, but I feel in such a good place to deal with it right now.
As always, I am kept strong and sustained by my support network of friends, family and DINET folks.
Photo: The birthday girl with my dad. PINK birthday crown courtesy of my favorite Sunfish, Melissa. Dad and Abbie came over for dinner and brought me fresh Sushi! Yum. Earlier in the week, Mom made a meal of all fresh local foods including lamb chops. Also, of course, we had a yummy gluten-free, dairy-free cake which I ate off of all week long! It was a beautiful birthday. I got to talk to many of you on the phone and also enjoyed all of the wonderful cards and gifts you mailed! You bless me so much.
