Talk About TMI...

So usually I write my snarky experiences with this ridiculous disease and my various, quite adept, coping mechanisms with great ease, perhaps a chuckle aloud all in a room by myself, and the occasional, "You REALLY put way too much of yourself out there, Andrea," type of thing. But today, I find myself wanting to write a more educational, but by all means, not to medically-written pieces about the, ahem, pieces of me, that are soon to hear the trumpet play TAPS.

In any case, in order to gear myself up to do what I am now doing, actually sorting my own thoughts, feelings and knowledge about this on the modern version of paper, I had to take a 3 hour nap after what was probably a rough 2-hr ride home in the car with my mom where I MAY have said two sentences since my mind was running a mile a minute.

A warning - I am not holding back on this one so if medical descriptions make you woozy then - WHY THE HELL ARE YOU READING A LYME BLOG - but this is probably not the post for you anyway.

It's been a while since I had my last surgery and by a while a mean less than two years ago, when I had my gall bladder out. At least, I think that's the last thing I had removed. But I am no stranger by now to surgeries and my lower half have been through quiet the ringer during the past several years. I have had two "girlie" operations in my time, one laparoscopically for endometriosis and one which turned into a big show with me giving birth via c-section to a coconut sized cyst which was so hard they could not pop it and bring it out through my belly button In fact, the connective tissue was so dense, that they couldn't even get IN my belly button.

Endometriosis is a disease in which the endometrial cells that normally grow inside the uterus that shed every month with a mentrual period grow OUTSIDE the uterus on the linings of other organs like ovaries, fallopian tubes, intestines, cervix, etc. And this can get really out of hand. Some overachievers, such as myself, grow endometriomas the size of coconuts (in my case) or even larger so it becomes so painful that one's existence can and does revolve around how to navigate a 24-hour period of time by physically moving in ways which will not disrupt the beast. And when that time of month comes for the hormones to release to start shedding the wall of the uterus, all of the endometrial cells begin bleeding, and the belly area becomes engorged with blood. *GAG* I warned you.

AND HOLY SHIT DOES IT HURT. 

Now, my symptoms have been mildly calmed by my Mirena IUD for the past few years, but I had that IUD when I had my endometrioma coco-loco so I am not buying that so much as a remedy. 

So, here's your first hint, Scooby, it is UNLIKELY that this next procedure, try as they might, will be a successful laparoscopy. Nope, it's going to end up a laparotomy again, which the doctor told me was more risky this time than the first time. I get disclosure and all but COME ON - after I had just been through, well, we'll get to that...

So this is the first surgery I have had where I felt like there was no way on EARTH I was doing it at our small town hospital, so I was pretty shocked to get in to Dartmouth Hitchcock so quickly, considering I have never been a GYN patient there. Mom and I took off this morning and got there a little early and were able to eat a small lunch.

Everything went pretty quickly, except my exam. We talked for a while about WHY we, meaning, Dr J, Dr. Steve, and I were all pushing for a full hysterectomy (even though I was still so nervous by the scope of it all) and why my hometown GYN was apprehensive (thought I should keep an ovary, etc). I was pretty firm with her, having decided that I respected that she knows nothing about Lyme, I would not bring it up in the appointment and that it's in my file, she knows. The reason for this procedure is because of a LONG list of hormonal issues I have struggled with and suffered from since the age of 11, when I got my first period and not so coincidentally, contracted Lyme. In other words, I don't need Lyme to take care of this. It's a endocrine-nightmare in and of itself.

She tried to talk me into talking Lupron which temporarily puts you into menopause and being fully aware of what it is I flat out said no, knowing it will not alleviated ANY of the LYME-related issues I have with regards to this. My body has had enough and it's time to give my poor endocrine system, which between all of the stuff I have mentioned, hypothyroidism and Addison's disease, has been through the proverbial ringer.

She asked me to go pee, which I did and then when I came back she told me she wanted to see if my bladder had emptied completely. Enter the insertion of the catheter WHILE I WAS AWAKE. Wait, now WHHAAATTTTT? I am pretty sure there are rules about this and I should have been sleeping. Next thing I know she is emptying out the rest of my bladder and tells me it's normal. Excuse me, you shoving a catheter in me while I am awake is NOT normal. Just sayin' Yes, another day in my totally normal world.

Yank. Ouch that hurt. It's out now. All set. Super.

And so began the exam. I don't need to tell you what an OB/GYN exam is like. What I WILL tell you is that as she examined me, she realized that she had better finish quickly because with every poke inside OR outside of me more tears would stream down my face and I was shaking uncontrollably. It was the shortest exam I have ever had, probably because I already had so much on paper and because it was obviously that it was excruciating for me. It took me several minutes to come back down from that tailspin.

Once I was washed off and dressed again, she came back and said that it would be "more than reasonable to suggest a full hysterectomy". And I knew it was the outcome we wanted, that it will help me get around those GYN inflammation issues which have been getting in the way of a faster recovery for me, but it was still oddly a very scary thought. This was not a reaction I expected and it's not like me to get freaked out in the slightest.

Now, for the tiny education piece I intend on sharing, I want everyone to know that I feel it is up them as patients to make their own choices and I do hope everyone respects my right to make my own without judgement. I have had the necessary discussions with the people who should have a saying this matter we are totally fine the fact that I will be unable to have any more children aspect of it all. This comes from a couple of places. First, I a not living with or married to anyone so I don't feel that having another child is really even on the boards for me. Second, there is quite some question as to whether my body would be able to carry a child at all and most importantly and this is where MY choice not to have a biological child has come in is that Lyme is passed in utero and I just would not want to risk the miscarriages, stillborn births or birth defects I could pass on to a child KNOWING it would be a possibility. There are many people with Lyme who give birth and have babies and children who are doing VERY well and I celebrate them. I just knew that day at Dr J's office when I saw the baby scale, that it would not be a road I would choose to take.

The complication I now face is that the date of surgery falls when my parents will be away and while I am hoping to get in earlier on a waiting list, it looks bleak, which means I will have to push it back which would mean... wait for it Kim... I would arrive at my companies conference fresh out of surgery - not as fresh as the LAST two years but fresh no less. The other option is to wait until AFTER I take Mini on our Disney Cruise, but that is too far away and I cannot stand the pain for 3 more months. Not happening.

So, here is where we all come together and make the universe magically create an opening in the surgical schedule (with any well-qualified DH surgeon) in BEGINNING - MID FEBRUARY. Let's just get this DONE. I need all vibes, prayers, universal mojo to bring t he clock around on this one so I don't have to suffer several more months of this due to calendar conflicts. Seriously...

So this ended up being snarky and uneducational after all! Then I have actually lightened up a bit and gotten back to my own self again.

Paranoia

It was so strange. Last night I was having a dream and I woke up at 11:48pm and was completely sure someone was in my house. I lay there on the bed without the slightest of movements for several minutes, hearing crackling noises downstairs, as if someone was going through papers or something. Then I realized, "Oh no, this is what used to happen to me years ago," a sobering thought which made me realize I was going through an episode of paranoia again.

If you read my book you know about my experience in great detail. I refused to go to that place again. I admit, I did look out the window to see if anyone was there, but I nipped it in the bud and refused to go check things out downstairs. I was not going to let this get the best of me again.

Eventually, I fell asleep again for the rest of the night. Everyone is in tact and awake, so I am assuming that yes, I was paranoid, as I once used to be every night. What this means is this first week of treatment has opened up yet another Pandora's Box. The lactoferrin/xylitol combo managed to break through some biofilm that released the bacteria (or spirochetes) that used to cause these issues in the past. So, now I am fighting the paranoia again. This makes for LONG nights of fear and sleeplessness. I am hoping I can just keep my wits about me, remember that it's in my head temporarily and that it's part of the battle.

Paranoia is a very real symptom of Lyme and can manifest itself in many ways. Sometimes in the form of jealousy, when the patient is afraid that something is not right in his/her relationship(s); or social phobias, which I suffered from for years, when going to meet friends seems completely overwhelming. You feel too ugly, too fat, too dumb, or just plain not good enough. It's a reality and it's important that spouses and loved ones know that. And it's important that patients of Lyme know that you CAN get past that. Recognize it as a symptoms and know as you diligently treat your disease that it will go away eventually, even if it pops up it's head every now and again. Just think of it as a game of whack-a-mole. That's how I cope.

The Hysterectomy Summit

Well, my week in paradise came abruptly to an end when I started Week One of my new three-week antibiotic protocol on Monday. Not to be gross, but this protocol involves a lot of throwing up, constant diarrhea, and extreme exhaustion. I was taking Omnicef, Artimisinin, Doxycycline, Mepron (GAAAAAAG) and on the last days added Flagyl and Diflucan. Now I have the weekend off of antibiotics, with the exception of the Lactoferrin/xylitol water mixture which I do for three more days. A new week and protocol begins on Monday.

So this is where I enter the cheer that Mini and I share when each antibiotic week is done (now five years old BOOHOO) "I week down! Two weeks to go!" Followed by a high five.

While the week was awful, I will acknowledge that I was much more lucid and was able to handle the treatment better than before. I think it's partially because I got away from it all for a week of everything good in life, and returned energized. I also think that removing Septra helped a lot. I still spent a lot of time being gross, but I was at least able to be awake for a couple of hours and watch TV here and there.

On the hysterectomy front, there is a bit of a battle going on. Both of my Lyme literate doctors are hellbent that it should all come out. While my OBGYN didn't say no, he was pretty insistent that I keep the one ovary I have left for hormonal reasons. I have now gotten a referral to go to Dartmouth Hitchcock on Tuesday for evaluation. I have PLENTY of reasons to have this procedure and I honestly want it done. I'm almost 40 and to be honest, I have not only been told that my body could not handle a pregnancy (which is not surprising given my lifelong issues), but that I would never want to pass Lyme to a baby in utero.

I've never really had that physical biological clock. When I say that, many say it's BS because I adopted a baby girl when I was 34. But all my life I thought and talked about adoption and so when it seemed the right time, before diagnosis during a lengthy time when I was moderately a-symptomatic (although now I know just how symptomatic I actually was), I knew I was meant to adopt. I see my daughter as a gift from the universe, who knew I should not have a biological child, but rather a child who lights up every room, who is thoughtful and kind, and despite her Central Asian heritage, looks so much like me it's kind of creepy.

So please pray, send the fairy dust, good vibes, healing thoughts or whatever you choose in life to help the doctor on Tuesday agree to this FULL hysterectomy, because we believe that if I get it ALL out, I will be VERY close to long-term remission, our goal.

Paradise Gives Birth to Decisions

Yesterday I returned from a 6-day trip to Punta Cana which I earned through my job. It was an incredible 6 days and I have not felt so well in many, many years. The weather was a perfect 80 degrees with no humidity. I ate a lot of fresh seafood and fruit, so my body was happy. And best of all, my blue sky was able to come with me.

Yes, we are still together, but still taking things slowly, as treatment is rough on me and we both have our lives to live and sort out, but things are great. I know many of you wonder and many of you have asked me if we are still together, so there's your brief update :)

I mentioned that the New Year brought me the determination to fight as hard as I can to get to remission and I may well be closer than we thought if I indeed have needed a hysterectomy which could have been causing havoc. I go for the ultrasound tomorrow. To be honest, I want to have it out. Even my LLND thinks I should do it because my hormones have been a lifelong issue for me and when a naturopath is in favor of such a big surgery, it seems like a smart move to me. After all, Dr. Steve has treated me AND my crazy hormones for 9 years now. 

Imagine if for all of these months I have thought Lyme was causing this pain, when in fact it's a Lyme-induced endometrioma again. If it is, it just means I will keep getting them, so best to take the whole shebang out. I have had the necessary discussions with the necessary people and am at peace should I need to have it out. 

In any case, determination. I have had a lengthy discussion with my parents and a few other people and have decided that once I am in a stable remission, I will be moving back to Rhode Island, where I grew up. I live in a lovely town now, but it's really a retirement community and if I move back to Rhode Island, I will not have to start a whole new life. I have many friends there, my business has its headquarters there, and of course my blue sky lives there. Yesterday when I drove over the RI border into Massachusetts, I just started bawling my brains out. I felt like I was leaving the vision of my new (and old) home behind. Then it happened again when I crossed the town line here. I associate this town with illness, as I have lived here due to illness for so many years now.

I have begun to get my ducks in a row for a move about a year from now, but I am not sure that is soon enough for me. I feel desperate to get out of this skin and shed the shell of illness that has surrounded me. But I have to remind myself not to rush it, that I need to be healthy, or at least as healthy as one with Lyme gets, before I make the move. 

But did you catch what I wrote above? I am driving again! At least while not in treatment. Tomorrow I begin the same hellacious treatment as last cycle, only we have added Doxycycline to the mix. Doxy is known for shredding the gut like Freddie Kruger, so I am not excited about this one. I was almost unconscious during the first week of my last treatment. Unreal. I am nervous. I know I will be throwing up for most of the week, so I am going to be taking copious amounts of my 3 anti-nausea meds, but we know from last time that it really doesn't help. 

I don't have much more to write about besides the fact that my trip was wonderful. The heat beating on me took my pain away and for 6 days, there were many moments when I actually forgot that I am sick. The sky was blue and my blue sky was with me so I just felt like everything was well with the world. It was a beautiful resort and I earned the upgrades offered, so we had butler service and a mega suite. It was very romantic and relaxing. I am so thankful to my company for this amazing gift because the fact that I even know I can feel THAT good and have THAT much energy is such a great sign. 

My big PR campaign begins tomorrow. This will be a national campaign to get the book out. If you have read the book and not yet written a review on Amazon PLEASE do so. It will really help with the campaign to have many reviews up. Just go to Amazon and type in "A Twist of Lyme". Thank you for continuing to support me by following my journey. 

The H Word

I'm sitting here in the USAirways lounge at the airport in DC and I find myself staring at the screen, resting my chin in the palm of my hand. There is so much that I have to say and yet, it's so hard for me to even process some of it that I am struggling to find words.

It's been a horrendous cycle, but there have been many blue skies, such as my mind feeling more clear than it has in years, even when I have been in bed. While completely exhausted in some capacity all the time, I have been able to survive the past 3 weeks with just one nap. That is UNREAL in my world. SO yay for that. And then there is the fact that my body temperature, which once was a steady 95.2-95.6 at all times (hypothermia) has now stabilized at 98.5 thanks to Clonodine, which I have taken for over a year now and no long need. THAT is huge.

I survived the holidays quite well. I needed a lot of help with Mini while she was on vacation from school, but my mood was quite good for most of it. I recall feeling overwhelmed a few times and my mom actually calling me a witch at one point, but I'd rather be a witch for an hour or two, than a complete bitch all the time, like I used to feel.

This has also been a completely traumatizing cycle - the worst of any I have had yet. You have read the gory details and I have no desire to go through them again, but it's been hard. And today a new possible reality slammed me in the face with one word - HYSTERECTOMY. Now, I am not looking for anyone's advice on this or opinions for that matter. I have a few very trusted friends who have had them that I will be speaking to, but the fact is that I have had several major complications through the years with female reproductive issues (which had nothing to do with how I chose to become a mother) but have now presented the possibility that it might, in fact, be the easiest thing on my body if I have one. Of course, I have an exam scheduled and I will seek several opinions, but it makes sense as to why my sacral pain, with all of its open nerves being compressed by what I realized was probably an encore of my Lyme in the Coconut chapter of the book.

For several months I have had excruciating sacral pain and because the CT scan and X-Rays came back clean (I did end up with an arthritis diagnosis in my thoracic spine), and because the pain is so much worse when I have my period, rare since I have an IUD, it seems likely that I have another sizable cyst or endometrioma growing again. It's a huge and very personal decision that I don't know if I will have to face or not, but it has me teary and taking deep breaths.

Dr J and I agree that had this pain not been so disruptive during the past 2 months, that I would likely feel much better than I do now and we feel it is interfering with my treatment. So, after I return from a MUCH needed vacation, I will go in for yet another vaginal ultrasound and see what the verdict is.  I have pretty much accepted that if I have a large cyst again, that I will likely have a hysterectomy. If that is what will give me a chance at a more normal life, then I am OK with that.  I have been blessed with a beautiful daughter and cannot ask for more than that other than to actually have the ability to be there with and for her as much as I would like to be.

So, the H word. Sigh.

The next unfortunate piece of information is that despite all of the hell of last treatment, I am going to do it all over again. Dr J's theory is that we just need to bang this Babesia treatment out HARD, adding Doxycycline (infamous for causing gastrointestinal havoc), to slam it out once and for all, then start lightening up on treatments. I fear this means another cycle of hell. I actually pretty much know it will be, but if it's my ticket to starting to slow things down, reevaluate, wrap things up and move toward remission, then sign me up.

And there is so much more to write about, but those are the two biggies. I'm going to have at it AGAIN AND there is a new organ on the table for possible removal, but really at this point, what's another organ? ;-)  I'd write more, but it's time to wrap up and make our way from this quiet and lovely lounge into the frantic cold loud terminal which sets me off. I wish I could just teleport myself to my bed. I'll write more when my thoughts are sorted out and I feel emotionally up to it.

New Year's Resolution

I'm keeping this one positive no matter what, because I have decided that this year, 2014, is going to be my year of wellness. I WILL improve this year. I AM ready, willing and able to improve every day and be my healthiest self. That is my current positive affirmation. My New Year's Resolution is to do everything I can to reach remission, but also to prepare for my future financially and emotionally for some changes.

But in my usual in with a BANG fashion, I enter 2014 with a new unfortunate diagnosis. For about three months now I have had excruciating spinal pain from my lumbar (lower) spine all the way to my cervical spine (top of my neck). After my CT Scan came back normal (YAY!!! What's NORMAL MEAN?) my gut told me we were still missing something. I recently changed my primary doctor because my old one, who I loved, changed to a hospital an hour and a half away. So, I had only met this new doctor once, but he sat with me for almost an hour and a half, just to talk and get to know me.

It was an amazing meeting, actually. He was very understanding and while we all know the conflict surrounding Lyme and the medical community, he listened to me very carefully and was open-minded and seemed to take in everything I said. When we had gone through everything he said, "You know, I work amongst a breed that can be very arrogant. What many doctors don't understand is that when someone comes to you and is ill and in pain, and as in your case, having suffered their whole lives, that it is not an entitlement to treat such patients, but a privilege." I think my jaw hit the ground. I have been VERY lucky with the team the universe has presented me with since I started my treatment with Dr. J and this man seems to be another empathetic and intelligent open mind to work with. For that, I am very grateful.

As I was leaving, he mentioned he was very happy that I was set up with a reputable LLMD and that should Dr. J ever need any local tests ordered, that he would be more than happy to order them.  So, I called my PCP and asked him to please order X-Rays of my spine, which he did with no questions or requirement for me to go in for an appointment, as promised "you have enough appointments".  I am glad I thought to ask for this because I would get an answer as to what has been wrong, beyond the Lyme nest that has been released into my spinal fluid.

I know that acupuncture will help and I plan on continuing to be treated by Leah here in town (she is amazing), but I am concerned about this and really want to talk long and hard with Dr. J about it. Is this permanent or just a temporary result of treatment? What can I do to prevent it from worsening? How bad can it get?

You see, I am determined to get into remission this year and take my life back. I am determined to make a move away from where I live once I am stable and don't need the constant parental support. I am just determined to have a life and be happy again. And 2014 will do that for me. I am determined for that to be true. But even if Lyme will be my nemesis for life, I need to learn to live with it as an ally, to live with different laws and cultures, but still work in unison together. Not sure if that makes sense to you, but it makes perfect sense to me. In 2013 Lyme was my enemy. I think this year I need to be at peace with it and make sure to create more frequent happy moments.

And so with that, I wish you a Happy New Year!