Sunday, May 26, 2013

My First Official Herx -

While promising Part 2 of my personal Lyme story, the disease took over. I am in aggressive antibiotic treatment and drugs #1, #2 and #3 were not problematic in any sort of incredibly memorable way. (Although their cost is enough to make me weep.)

Enter Drug #4. Whoa. All the classic signs of a herx showed up on Day 4 ... headache, chills, swollen glands, body aches, neuropathy, visual disturbances, the urge to vomit from my toes every 30 seconds, etc, etc, et al. One day I sobbed all day for no good reason and the next two I slept like a drugged person for the same reason. A real smorgasbord of symptoms. I hate to admit to this, but I was vaguely excited in that "DEATH TO SPIROCHETES" kinda way. For awhile. Like two weeks.

I have bladder issues. Interstitial Cystitis, to be exact. It can be a bit problematic from time to time but, hey ... I have Lyme Disease. What's a little IC among friends (IC is a symptom of the bacterial co-infection, Bartonella.) I had some slight "uh oh" signs/symptoms about a week ago and just upped my water intake. Whew. But it wasn't getting any better. It was, in fact, getting much, much worse very, very quickly. My entire pelvic region felt like it was on fire and was too tender to even touch. A friend of animals large and small, I dumped my cat off my bed onto the floor lest he even attempt to put his paw on me.

Ironically, I was online with a bunch of women who also have Lyme when the big one hit.

BOOM. Within a few minutes I was having breathing problems, unable to sit up, pretty much unable to move. My head went wild with the possibilities. No doubt my appendix were rupturing (wrong side.) I had an ectopic pregnancy (um, I'm 58 and had my tubes tied in 1989.) Gotta be an exploding ovarian cyst (yeah, highly unlikely at this stage of the game.) The ladies encouraged me to take both Vicodin and Ativan which I did seconds before I emailed my LLMD.

My LLMD (Lyme Literate Medical Doctor) is amazing and literally returns emails in a triage fashion. Of course, I have one LLMD. Who knows how many patients my LLMD has (and offers the same support!) But, because I reread the email I sent later, I know said this, "This is Ruth. I think something is terribly wrong with my stomach and I'm in so much pain that I took a Vicodin AND an Ativan and I don't know what to do because I don't know what this is and I'm really really scared that I'm going to die soon."

I got a very calm email back stating something like, "Ruth, please always remember to tell me what meds you are on. If we are treating Bartonella (we are) and you have IC (I do) then the spirochetes are reacting to the meds and are attacking your bladder."

I wrote back, "YEAH but what do I DO!?!?"

"Read the treatment manual." Well, DUH. I'd liked to have asked myself, "WHY DIDN'T I THINK OF THAT" but clearly, I was not thinking clearly. I was hurting. I thanked my LLMD for the time, the Vicodin kicked in, and by the next morning my bladder didn't hurt at all. I didn't even feel like I had been hit by a Mack truck. Only a minivan.

While I still have herx symptoms I am not literally and figuratively in the same place I've been in for the past few weeks. And I'm certainly not rolling around on my bed crying and gasping for air. Believe me when I tell you this, I am soooo thankful.

This experience has made me gain a new respect for "the herx" and its power. I've been a little cautious going out of the house alone because I really don't want to fall to the ground and scream in the grocery store. But doing life solo, this must be overcome. While I can deal with it if I don't have much food in the house, Larry has a tough time doing life sans cat food. And he has demonstrated before that he has the ability to make the lives of those who love him a living hell.

I have now laid in a supply of canned tuna (for me,) and both cat food and kitty litter for him ... should this ever happen again in this decade. My household supplies rival that of a diagnosed hoarder pre-Y2k. I Am Prepared. I mean, if anyone needs an extra five or six dozen rolls of toilet paper I'm your girl. But hands off my Epsom Salts and apple cider vinegar. I've got bugs to fry.

Sunday, May 19, 2013

No Treatment Post Yet ...

Ironically, I am way too ill to write much at the moment ... which I suppose is something to talk about in my own treatment post. To quote my LLMD "it gets worse before it gets better." Good news. The meds must be working because it's WAY WORSE.

But in the meantime ....

Thursday, May 16, 2013

Myra -

I know my own Lyme treatment post was supposed to come next, but sometimes life just happens. Last night was one of those times.

I think I've mentioned my BFF, the PSYCHOtherapist w/whom I went to high school; shared a deep and abiding mutual admiration; and continue to now. No, she's not psycho, but she is a gifted therapist who is at the top of her game career wise. After this her mad skills will take her in any direction she wants to go. Ooooh, the stories I could tell about her (and she about me.) Usually the same story from different vantage points.

* The time we were making a jean skirt out of a pair of Levi's and detail oriented Ruth left the room while the impulsive PSYCHOtherapist "just tried something." I remember walking back into the room and seeing "the look" on her face. When I asked, "You CUT them, didn't you?" she just nodded at me. I probably turned around and walked back out.

* I remember her mother's exquisite china, and more importantly, her liquor cabinet. Myra was a fan of Port and Creme de Menthe. "How do I know?" you ask. Because the PSYCHOtherapist and I poured ourselves a teacup full of Creme de Menthe and while we were sipping it heard the garage door open. Myra could sense things out of her control miles away ... she surely knew fully well what was going on in her family room as she moved quickly through the house. What was I supposed to do? Let my best friend get in trouble with her mom? No way. I calmly drank the rest of the contents of the teacup and still struggle with mint chocolate chip ice cream (not that I get to ice cream anymore!)

* The day the PSYCHOtherapist introduced her best friend to one of her male best friends ... and that's all I have to say about that.

* A sibling relationship that rivaled my sibling relationship.

Throughout our 40+ year friendship we've been there for each other through thick and thin. We are each other's touch stone ... there are times that no one else will do. Last night and today were two examples.

I know Myra has been ill for awhile, but in true Maniac style she never let on except to those closest to her. It's been a long road fraught with sibling challenges, blended family challenges, and the challenge of bringing together a family spread across the country. But the PSYCHOtherapist has been at the helm the entire time and when she felt others needed to lead, she was the rudder ... still staying the course.

I awoke at 3:30 AM this morning awaiting the usual sheet soaking sweats that come w/Babesia. Nothing happened. I tried to go back to sleep. Nothing happened. As is my normal middle-of-the-night-wakeful-period protocol, I asked G-d if there was anything He wanted. The PSYCHOtherapist came to mind and I prayed for her.

At 3:46 AM I received a text, "Are you there?" Why, YES, I was. Myra passed last night around 2:00 AM. The PSYCHOtherapist and I exchanged a few texts and talked more today. In the back and forth of the conversation surrounding services I said, "What really matters is that ten years from now you can look back on this and be ok with your decisions. Even if they're not ones you'd have chosen." She quickly agreed and then I asked for HER advice in my own maternal situation. My blessing of a BFF said to me, "We can give those we love the honor of respecting their decisions ... even when we know in our gut they are not right. To do anything else would not be respectful. And YOU KNOW OUR MOTHERS!"

She's right. I do know our mothers ...

May G-d watch over your household, Myra. I can only speak for the PSYCHOtherapist but I know you are soooo proud of her, even if those words never passed your lips. She came "home" for you, she stayed with you, married an amazing man, is the mother of two highly accomplished compassionate young women, and grandmother to three beautiful little girls. Thank you for giving her to the universe, Myra.

A hand well played.

Sunday, May 12, 2013

Mother's Day: Honoring ALL Women

While I did not write all of this, I wish I had .....

Honoring all women today ~

To those who gave birth this year to their first child—we celebrate with you

To those who lost a child this year – we mourn with you

To those who are in the trenches with little ones every day and wear the badge of food stains – we appreciate you

To those who experienced loss through miscarriage, failed adoptions, or running away—we mourn with you

To those who walk the hard path of infertility, fraught with pokes, prods, tears, and disappointment – we walk with you. Forgive us when we say foolish things. We don’t mean to make this harder than it is.

To those who are foster moms, mentor moms, and spiritual moms – we need you

To those who have warm and close relationships with your children – we celebrate with you

To those who have disappointment, heart ache, and distance with your children – we sit with you

To those who lost their mothers this year – we grieve with you

To those who experienced abuse at the hands of your own mother – we acknowledge your experience

To those who have lost maternal relationships due to the disbelief of chronic illness - I grieve with you

To those who lived through driving tests, medical tests, and the overall testing of motherhood – we are better for having you in our midst

To those who have aborted children – we remember them and you on this day

To those who are single and long to be married and mothering your own children – we mourn that life has not turned out the way you longed for it to be

To those who step-parent – we walk with you on these complex paths

To those who envisioned lavishing love on grandchildren -yet that dream is not to be, we grieve with you

To those who will have emptier nests in the upcoming year – we grieve and rejoice with you

To those who are awaiting new life either through pregnancy or adoption – we anticipate with you

This Mother’s Day, we walk with you. Mothering is not for the faint of heart and we have real warriors in our midst. We remember you.

Saturday, May 11, 2013

May Day: Raise Your Hands Around the World! (My Lyme Story: Part 1)

This weekend Lyme protests and rallies are being held around the world. In addition to blogging we've been challenged to hold one person's hand and tell them "our story." Well, there's nary a hand to hold, and due to the opposable thumbs issue, Larry is a no go.

Lucky you! Hold out your cyper hands and let me tell you a little story. Really. Let me hold both hands ... you and me, knees to knees.

Previous to 2000 I had been married for 20 years and was/am the mother of four, with whom I stayed home.
* A divorce that was finalized on December 24th, 1998 left me the unmarried mother of four, with sole physical custody.
- No alimony or spousal support of any kind.
- My sons' father paid his "mandated child support" and that was all. No help with school clothes. No assistance with sports/music/art lessons. No trips for the kids. No spending spring vacations with them.
* It was very clear that "sole custody" meant "flying solo." I needed to find a very real job very quickly. Which I did.

I won't bore you with the details but it was a pretty bumpy road for awhile. I dusted off my BA in Psychology and a provisional Elementary Teaching Certification and started working on my M.Ed while substitute teaching/taking care of kids/living life. And finally, I was hired at a local school in town.

That spring break, the first week in April of 2002, I caught the same flu my sons did. I sat on the couch for a week completely drained. At the end of the week they were better. I wasn't. But I dragged myself back to work where I began to sweat and run HIGH fevers of 104. I took time off to "heal." After several ER visits and a diagnosis of "Fever of Unknown Origin" I was sent home and told to drink lots of fluids.

By May I was unable to work at all. I literally couldn't make it through the day. With GREAT sadness and shame, I had to get a sub for the rest of the year. During a routine body scan to find out WHAT was wrong with me it was discovered that my gallbladder was about to rupture. I was asked, "Aren't in you in any PAIN?" Well, yeah people, I've been telling you this for about six weeks now. I have CRAZY pain and you call me "drug seeking." I'm not an idiot. I don't trust ANY of you anymore. Give you fuel for the fire over which you roast me? I think not.

I had my gallbladder removed but didn't "bounce back" as did the rest of the patients in my room. I noticed my abdomen was turning black. I asked the doctor about it and was told, "Oh, that's a little blood in there ... your body will reabsorb it." Not one to complain, I lay in bed looking out at what was finally SPRING in Michigan, and then I saw them. All the little white Christmas tree lights were on in all the trees! It amazed me and I asked a nurse why the holiday lights were on in May. Things began to happen very quickly. My bed was inverted and I heard my doctor's name being called, "STAT! STAT!" He rushed in and explained to me that my gallbladder had been so infected that it had adhered to my liver which tore during surgery. I was "bleeding out." He asked me to sign paperwork so he could go back in and fix my liver. I refused. Nope. I had just HAD surgery the day before. I was SICK. NO MORE SURGERIES. He explained that he NEEDED to go back in. Nope. Not having it. No more surgeries. Let me repeat ... I just HAD surgery the day before. NO WAY would my insurance cover it. Finally a friend offered to pay for the surgery. I signed the paper. We "ran" down the hall and I was being told to take my contacts out. I started to cry realizing that something was VERY wrong. I prayed for my sons and begged G-d to let me see them again. Please, please, please ... don't let me leave w/out saying goodbye to them! I was put into a little room with about five nurses hooking me up to something. Things in both arms, bags of blood. Lots of intense, curt voices. Lots of urgency. I watched from the upper left corner of the room. This very pale woman looked back at me. I watched this woman being rushed into surgery where the doctors were ready and advancing with scalpels. She SCREAMED, "Noooooo!!!! I'M AWAKE! I'M AWAKE!"I stayed with her.

I woke up in a room covered with blood and an INSANE need to use the restroom. I was not given permission to get up. I just kept leaning on that call button and reminding them that I WAS going to relive myself. Even if it was all over their bed. Finally my doctor rushed in ... also covered with blood. I asked, "What happened to YOU?" and he responded with, "Yup. It was a geiser." I laughed, RELIEVED that I was finally going to be ok. When I was out of recovery and back in my room a nurse asked, "Did you know?" Well, yeah, I did. I knew something was really wrong. She leaned closer to me, took my hand and said, "I know. Most patients do." My fever came down to 102 and I was released. I cried when my friend left me at home. My sons' father refused to drive me to one of our son's 8th grade graduation so I missed it. Whatever was wrong wasn't fixed. None of it.

I actually taught for the next five years "crashing" every summer. BIZARRE high fevers. Hair loss. Drenching sweats. Delirious. And sooo ashamed. In 2007 I began to notice new symptoms. The sleeping pill I'd been taking since 2002 stopped working. My body began to go numb. I couldn't keep a thought in my head. The ANXIETY was nothing I had ever experienced. We're not talking "generalized" or even "situational." We're talking insane. I could have clawed drywall off the walls.

In late June I went to the doctors where I was pronounced mentally unstable and anorexic. I was eating 3k calories a day, keeping a food diary, and was being called anorexic. I grew up in NY, I know "the rules." I asked to be tested for Lyme. My doctor looked over her shoulder and laughed at me, "YOU don't have Lyme Disease!" I fired Doctor #1. This went on through about 30 more doctors until I read Dr. Ritchie Shoemaker's "Desperation Medicine" and saw myself there. I read "Mold Warriors" and saw myself THERE. I flew to MD to see him. In December of 2007 I was declared a "moldie." In January of 2008 I met with a doctor here in MI and was given the diagnoses of Chronic Fatigue Syndrome and Fibromyalgia. I lay on the couch three or four more years ... volunteering where I could, and reading everything I could get my hands on. Even if I had to reread it 1,000 times because I now have the attention span of an ADD five year old. By this time I was sporting a PICC line for IV fluids as I was on that what-the-heck weight loss program again. I was interviewed both in a local newspaper and on local TV about ME/CFS. The emails poured in and the reporters forwarded them to me. Other than the people who wanted to tell me I had demons or some sort of unrepentant sin in my life, the general consensus was that I had Lyme Disease. To prove them WRONG I called "the lab of all labs" and ordered a test kit from IGeneX. (DO NOT SETTLE FOR ANYTHING LESS!) My doctor agreed to sign the requisition form and I literally hyperventilated myself to the lab down the street and had my blood drawn while mentally rehearsing my response to all those who thought I had Lyme and were wrong.

Two weeks later my test came back positive. I do not have ME/CFS or Fibromyalgia, both of which are a collection of symptoms. I had found the mother lode of root causes ... the diagnostic black vortex. I have Lyme Disease.

Stay tuned for Part 2: 18 months of treatment so far ...

Tuesday, May 7, 2013

You Know You're a Bad Ass Lyme Warrior If ....

1. Your day revolves around healing and you're good with that.
2. You no longer compare yourself with who you "used to be" and know that who you ARE, is real.
3. You not only know to swallow capsules differently than pills but you can down handfuls at a time.
4. You "rock the detox!"
5. "Cheating" means having had anything processed, anything with sugar, or with white flour.
6. You can walk into a restaurant and tell them what you need to eat w/out feeling like a PITA.
7. You sell everything you own to afford treatment and delight in the fact that your closet is REALLY clean. You don't even MISS television.
8. You realize your body is acting like a two year old's and you don't "scold" it for being sick. You take care of it.
9. Doctors tell you, "You have a HIGH pain tolerance" and you think, "Pffffft, you ain't seen NUTTIN' yet!"
10. You stop mourning what you lost and are thankful for what you've gained:
- A recognition of what loyalty is.
- A new definition of a true friend.
- An increased sense of personal strength.
- A richer spiritual life.
- The removal of all toxic people w/out a SHRED of guilt.
- Learning to laugh at yourself. Really laugh.
- The ability to let go and move on, truly knowing life has more in store for you than anything left behind.
- Not only having the time to "stop and smell the roses, but doing so; being amazed by the universe and things "everyday people" take for granted.

Saturday, May 4, 2013

May Day!!! May Day!!!

The term either conjures up pictures of little kids and May Poles or a military emergency.

Well, it's an emergency alright and this is officially "May Day" for Lyme patients world wide. An emergency of pandemic proportions as well as the world wide day of protest.

STOP the collusion of uneducated academics, Big Pharma, and insurance companies. It could be YOUR disease that is denied next.