Set Your Alarms - Let the Interviews Begin!

While I am busily filling in all of my family needs for my downtime during my upcoming surgery, there is no rest for the weary here. I feel AWFUL and honestly cannot get that robot on me fast enough, but I have an important message to spread and I do not intend on letting pain slow me down. So, for the next several weeks I have some radio interviews set up, as well as some possible print interviews in the works, some local, some further away, and some possible (fingers crossed) very large national press possibilities. 

In the meantime, I ask you to listen online this Monday, February 10 to my first two interviews. Mind you, I will probably be very nervous and this will be my first novice crack at it, so give me a break, but it's press and press we need! 

The first interview is with a big radio station in Portsmouth, NH which reaches down to Boston and up to Portland, ME. Um, AHHHHHHHH!!!!!!   It's at 10a.m. EST on  WHEB 100.3 ROCK and you can listen LIVE via the link at the top of the page.  This is RIGHT after the Morning Buzz which is a HUGE show, so let's hope for THOUSANDS of listeners and LOTS of attention on Lyme! 

The second interview is that same night, Monday, February 10, at 8:30pm EST on a radio show out of Tampa Bay, Florida called Health, Wealth, and Wisdom. You can also listen to this on the internet by clicking the link at the top of the page. 

Mind you, my Lymie friends, my book is about my PERSONAL experience with Lyme. My goal is to HUMANIZE Lyme. I will not get into the medicine and science behind Lyme because I am not a doctor, scientist, or researcher. I am a Lyme expert when it comes to my own experience as a regular person who has suffered for 29 years, 26 undiagnosed. And that is the angle this will be coming from. 

So, I ask you to tune in, show your support and spread the word! This is exciting stuff! Let's make some noise about Lyme, sell some books - A Twist of Lyme: Battling a Disease That "Doesn't Exist" can be purchased from http://bookstore.archwaypublishing.com/ and we can really help people understand that this disease is not only REAL, but a pandemic. 

Robots, and Experts and Surgery, Oh My!

Today was a long day for this Lymie. Mom picked me up early in the morning and we headed down to Portsmouth to go to Homeland Security to get a TSA Precheck for me so I can skip those nasty airport lines and not have to take off my shoes, etc. This will be great, with all of the traveling I do and especially when I take Mini on the Disney cruise in April. There is nothing worse than that line that doesn't MOVE and the people that cut the line at the Orlando Airport.  That process was very easy and in 10 days I should have my known traveler # which should make traveling WAY easier.

But it went so fast we had a lot of time to kill. So where did we go? Target, obviously. I was armed with my brand new shiny handicapped mirror badge and we went in to get Mini some things to do for the incoming Snowmaggedon (supposed to get 6-10 inches which means 12-16 here in the snow belt), but also some Valentines to work on. That was great because I NEVER would have thought of that until the day of...

So, we bought crafty stuff and i bought some unnecessary necessary stuff and we still had time to kill, but that was great because it was time for lunch. We decided to go to Chili, where I had not been in probably 20 years, but was right there and we just decided to go. As we were eating, we noticed three uniformed men stand up after their lunch and shake the hands and thank the people at another table. They had clearly paid for their lunch to thank them for their service, something that I will definitely do in the future. It was REALLY nice to see.  I love moments like that.

So we got through lunch as slowly as we could and... still an hour to kill. So we went to Petco and I bought Gunnar a memory foam insert for his crate, not because I am a loon, but because some of the bottom plates have fallen through and I have been padding them with lots of fleece blankets. I also managed to find the closest thing to his favorite ball which he ate last week,  so I had to throw away the rest. He has literally been sitting next to the pantry door where I keep the dog toys since the day I threw it out. Scratching and whining on the door. DRIVING ME NUTS. Of course I bought two but they will always want the same one!

And then we went to Bed Bath and Beyond and I bought some rather large heart-shaped cookie cutters to make my blue sky his favorite strawberry pancakes in the shape of hearts when he comes up next weekend for Valentine's Day. I am not a huge Valentine's Day person, but I have a short person here who LOVES all holidays, so I do what I can. I got some red placemats, a special one for her, a special plate and cup and napkins. I think everyone will be happy.

Well by this time we were done killing time and while arriving early to my appointment was to be at 1:45, I got there at 1:22. And thank goodness! WOW! The electronic device paperwork to fill out took a LONG time!  First, I want to say, that the energy of the office was incredible. It was upbeat, positive, and nurturing. I did not feel that way about the stark, sterile, serious, Dartmouth Hitchcock experience.

I only waited about 5 minutes after I was  done to see the nurse very briefly and then VOILA! A doctor on time! And she was really lovely. It was like chatting with an old friend. Very informal and yet, she asked all of the right questions, and didn't give me any crap about my Lyme. HOORAY! Anyway, we spoke at length about how the doctor at Dartmouth Hitchcock had give me an actual date for a March 5 full hysterectomy and that quite frankly, I did not like or trust them and I would prefer to do it with them at Wentworth Douglas in FEBRUARY being the keyword. I told her I would go in tomorrow if they needed me to.

I explained my "Lyme in the Coconut" chapter from the book to her (thought I didn't tell her about the chapter I explained the actual event of the 9 cm coconut-sized endometrioma) and she looked horrified and for her it seemed to be the icing on the cake. Yes, she was bringing in the big guns. I am so fortunate to say that she decided to bring in the Head of the Gynecology Oncology Unit from Mass General to use the Galileo robot surgery on me! Now, I do not have cancer... but my body is so complicated with the connective tissue disorder and adhesions I have developed from Lyme, that I need the best surgeon available and this surgeon, at the country's #1 rated cancer treatment hospital for several years, is the guy to do it. *goofy little jumps and golf claps*

Needless to say, I feel once again that following my gut and pushing forward and being my own health advocate has worked in my favor. I KNOW I AM IN THE RIGHT PLACE NOW.

Now, there was a bit of a hullabaloo on Facebook tonight that my status were sharing too much about my GYN issues, just my mention I had a GYN surgeon. Ok, I'm not going to get into this. My friend was just trying to make the point that not everyone has the full picture that these issues are stemming from Lyme and that that is why i am speaking so openly about it.

Which brings me to the following, Lyme causes gynecological issues. It has given me a lifetime of extreme menstrual-related myalgia, endometriosis surgery via laparoscope, a coconut-sized cyst which not only cost me my left ovary, but was adhered to 2.3 of my pelvis and they couldn't even get in through  my belly button, but had to open me up and do a laparotomy, a pretty serious operation, bring in another surgeon to assist in getting it done and admit me for 3 nights in the hospital. Lyme has caused secondary adrenal insufficiency (Addison's Disease) in me, as well as hypothyroidism. In short, there is not a freaking THING this disease has not done to my hormones.

It's important that you know this because Lyme is some serious shit. YES - everyone knows your joints hurt. YES - by now you that we have extreme fatigue and yet fight incredible insomnia. A lot of us a psych cases. But I really didn't even know that my endometriosis was caused by Lyme in my first book, so I never wrote about it like that.  You may not know things like this that Lyme can lead to situations like I am in now, which is why I choose to relinquish my privacy to educate the public and give Lyme a voice. I will continue to post about how things unfold and as always, thank you for following my journey.

Please comment on this blog entry HERE (not on FB) and all blog entries, as I love to hear from you. Also, if you have read the book, please be sure to REVIEW the book on Amazon! It's very important that there be a lot of response to the book, as my national PR campaign is now in full swing! I have two radio shows booked on February 10, which is very exciting! Things are starting to roll here! Let's just hope I don't have surgery THAT day LOL!

If You Want Something Done Well...

Most people can't wait for the weekend to come. For me, it's just an inconvenience. You see, when you are going through coordinating a major operation in conjunction with treatment for a chronic illness which isn't recognized as an actual illness, it's just a pain that offices are closed and another two days go without the ability to firm up plans.

My visit to Dartmouth Hitchcock, was helpful in that she agreed I should have a full hysterectomy, was a bit of a bust, because they cannot get me in until March 5, a time when my parents, due to other obligations, will be unable to care for me or, more importantly, for Mini. The next available date they had was March 17, which would have meant the recovery period would extend into my company's national conference and even into the Disney Cruise I have booked for Mini and me. So, Dartmouth Hitchcock's offers are simply unacceptable. And to be honest, there is not way I can even wait 5 week with this level of pain in my lower abdomen and lumbar to have the surgery done. So then I'd have to push it into what would be MAY is just ludicrous. So, as usual, I had to take things into my own hands. 

I did some research and decided that my next attempt would be with Wentworth Douglas Hospital in Dover, NH. This is actually a fantastic possibility because if I can get in in February, and I made it clear that that is a must, they actually have the Galileo robot surgical system to conduct the procedure which GREATLY  cuts down on risks, recovery time, and hospital stay. So this is very exciting. The woman on the phone was SO NICE I could not believe it and she actually took it into her own hands to get the records from DH which they swore they would not be able to send until next week. And then... she got me in for an appointment with one of their GYNs two days later. So, I go in to see her on Tuesday. I begged on the phone to not have to be examined again - that the decision has been made and the exam is so painful that I get teary even thinking about it. 

It will be interesting to see how it all turns out, but I am hoping it will just be a smooth transition. The hospital just underwent an incredible renovation, is closer to home, and I love the holistic/integrative approach of the GYNs AND they have the robot. So, maybe it was all meant to be anyway.   

Just a short post, but many have asked for the update. Now if Monday morning would just come around, so I can get back to scheduling...

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.