Confessions of a caregiver

Before I begin - I am not writing this post to solicit comments about how wonderful I am and how much I am doing for Heather.  In a kind and perfect world, you would hope that a parent would do anything to help their sick child.  Anything.


So, here we go.

I am not a perfect Mom.
I get frustrated.
I am scared.
I don't listen to my own blog advice - "don't judge a book by it's cover."
I think that I can fix or navigate this Lyme journey by myself, but I can't.
I cry.
I am so stubborn that asking for help is not an option.
Wow - did I just confess all these things?


I am beating myself up right now for not being a Lyme Literate Medical Doctor with years of experience and the diagnostic tools and cocktail of medicine, supplements, and herbs that could have fixed Heather in December 2104.   Pretty funny right?   I believed that after Heather was diagnosed and treated with a her six weeks of IV antibiotics and all the "specialists" said she was cured and it would take months to recover.  I believed her team of doctors and I thought they cured her. Sadly, they were saying what the mainstream medical community is told to say. I didn't know to question them or the final diagnosis.  It seemed impossible that they were wrong.


It is so easy to look back and think about the could-a, would-a, should-a situations.  If I could push a redo button, I would not have waited over a year to find Lyme Literate Medical Doctor.  I should have started my research much earlier.  I know - I really can't beat myself up over this.  


Since Heather has been living at home, we are navigating the living situation.  I love having her home, but I know that this isn't where she thought she would be at this phase of her life. It is hard enough to move home, even harder to not be able to work, and awful that she struggles every day with chronic pain. 


It is so hard to watch her curled up and crying because of the excruciating nerve pain.  If that isn't enough, she has to deal with brain fog, mobility issues, fatigue, loss of appetite, and frustration.  She has every right to be sad and depressed.  However, she is determined to push herself and try to have as "normal" of a life as she can, given her many limitations.

I am so used to my happy and healthy Heather that it throws me for a loop when she is sad.  This is where it gets difficult.  As her Mom and caregiver, there are days I THINK I know what is best for her, or I tell her what I think she should be doing, or I act all cheery and positive and tell her that things will get better.

This may not sound so bad - but imagine feeling like complete shit, too tired to get out of bed, doing everything possible to try to get some pain relief and stay focused.  This my friends is the day-to-day reality of chronic Lyme. 

Don't get me wrong.  Heather has good hours (not days), but the bad hours far out way the good hours. Keep in mind, that we haven't begun the second round of Lyme treatment.  They are still dealing with the secondary issues and trying to find the right mix of meds for pain relief.  We're not talking opiods - they aren't the best choice for chronic nerve pain.

So, imagine when Heather is having a bad day and cheery Mom comes home and starts fifty questioning Heather about what she ate, how does she feel, what did she do today, did she try an epsom salt bath (oh, I forgot, Heather can't bath when I am not home - getting out of  the tub can be difficult - time for a railing in the shower/bath).  Back to Cheery Mom - then Cheery Mom drones on and on about how she will get better, we have a plan, she has some excellent doctors, and blah blah blah.

Then Cheery Mom realizes that Heather didn't need to hear or answer any of the questions, and Heather just needed Cheery Mom to just be there - not talk, not question, not ask.  Cheery Mom already knows about Heather's daily struggles with nerve pain.

Cheery Mom realizes her mistake and gets quiet or just starts crying.  Remember - I am a crier.  So, Heather feels bad and thinks she upset Cheery Mom, when the reality is that Cheery Mom just needed to cry and Cheery Mom needs to keep her mouth shut. 

I can't speak for all caregivers, but even before Heather was sick, there were days when life is just tough and I get sad, quiet, and crying is a release.   Remember, I'm not perfect - shocking right?

I am trying my best to balance life's challenges, and I am learning that this caregiver needs to continue to love and help Heather, but I also need to give her space, let her vent, and give us space.  Heather is living this nightmare, she doesn't want to talk about it every day.  Heather and I are so close and we both want to protect each other.  However, we have a new normal now and we are both adjusting to these new boundaries and rules.  Sometime silence and time alone is what Heather needs.  Not the hovering and smothering mother that I can be. 

Heather is the strong one.  She is the one dealing with the pain, the frustration of not working, the sadness about not having the strength to go out and socialize.  She is aware of the amount of time and money needed to treat her.  Cheery Mom needs Heather to know that I  will do anything and everything to get her the best treatment available, I will try to follow her lead and help her when she needs help, hug her when she just needs a hug, or leave her alone when she needs space.  Fine, I will remove the monitor I had in her room so I could hear when she needed me - JOKE - that would be creepy - beyond creepy - sorry Kevin and Heather - HA. 

Here's a story about Cheery Mom at the doctor's office with Heather for a followup with her Gastroenterologist.  Qualified doctor, but not sensitive or educated about Lyme disease.  Heather was feeling like crap and dragged herself out of bed to go to the appointment.  It was a bad brain fog day and when the doctor would ask Heather questions, she would struggle for the correct word.   The Doctor would give Heather this perplexed and judgmental look , then look at me and I would provide the answer.  That in itself is hard for Heather. 

His specialty is all things digestive, so he is perplexed as to why she has so many different things wrong with her (ummm Lyme perhaps).  In 2014 when Heather got sick, CT scans of abdomen, liver, spleen were fine.  A year later everything had problems.  This doctor is only dealing with the inflamed and thickened digestive track.

So, an ick-oscopy was performed, there was no noticeable inflammation, but they took some tissue to biopsy and it revealed some inexplicable infection (ummm Lyme).  He has no clue why the scans were bad, the procedure results were normal, and the blood work inconsistent with all of it (ummm Lyme).  Does that sound crazy and complicated?  Sounds like Lyme to me.  Actually it is Lyme.  However, these non-Lyme Literate doctors don't know about Lyme.

However, Cheery Mom just wished that these doctors knew the pre-Lyme Heather.  The Heather that is spontaneous, funny, happy, healthy, and chatty.  The Heather that worked a 60+ hour work week and still found time to have fun.  Cheery Mom wants Heather go into these appointments dressed up and bubbly so they can get an idea of how she "used" to look.....and there you go......Cheery Mom wants Heather to be judged by her appearance.   Bad Cheery Mom.

It doesn't matter what Heather is wearing, that won't change the brain fog or the fatigue.  In my STUPID mind, if Heather was dressed up, then the doctor would be more compassionate and  understanding and less judgmental.  Stupid Cheery Mom.

Heather was an excellent actress back in the day - but she is not acting now.  This is the real Heather.  Unfiltered, raw and honest.  This is not the time or place to put on a show.  Do you hear that Cheery Mom.  Heather is the smart one in the room - not Cheery Mom and not the Doctor.  Heather hasn't hidden a thing from these doctors. 


In closing, I am learning that I need to stay focused on things that I can control - like my job.  I am also meeting with health care advocates to get advice on obtaining financial assistance for Heather.  We are in the process of starting the paperwork to apply for disability.  That was a hard comment to type - like I said, this is Heather's new reality.  Sigh.

Cheery Mom and Heather are thankful to so many people that help us.  Sometimes it is just a phone call to check in, stopping by to make us laugh, or driving Heather to an appointment....thank you.  Thank you for caring about both of us.

Cheery Mom is signing off  and Cheery Mom has to go.  I mean she really has to go away.  Come back Lisa - I need you.  Stop trying so hard and just be your wonderful self !!!!

Remember, I started of this blog saying that I am not looking for anyone to tell me that I am a great parent.  I can do that myself.  HA.

Now I just have to put my words into action and continue to grow and apply what I have learned.  Bye bye Cheery Mom - you were starting to really annoy me.  Heather is too nice to say it, but she wants her mommy back too.
 
xo
lisa

Lyme rally was a reality check

Heather and I attended the Lyme rally with Joe, Kevin, and his parents. It was one of the first nice weather days in DC in quite a while. I went there with so much hope and desire to help with spreading awareness.

The rally attendees were easy to spot because everyone was wearing lime green attire. Some awesome ladies rocked their lime green dyed hair and, most were wearing lime colored sunglasses/arm bands/nail polish.

I expected more people at the rally but the reality was that too many people were too sick to attend or if they aren't from the DC metropolitan area they may not of had the money to travel since they're spending hard earned money on treatment not covered by insurance companies.

The common denominator for all the people there was that they have Lyme, they love someone that has Lyme, or they lost a loved one to Lyme. I wish I could say they HAD Lyme disease. However, sadly there isn't a cure. Another reason that these AMAZING advocates spent countless hours organizing this rally. 

A huge thank you to everyone who attended to bring attention to this insidious disease. I am confident that we are getting more exposure and that the public is becoming more aware. However we can't stop, we must keep pushing forward, we must continue to insist on more reliable testing, affordable treatment, and a cure. I also wish the  media had stopped by.  I sent several press releases that week to local news stations and never heard back.  Silence will not stop me.

One thing I've learned through this journey is that you can't judge a book by it's cover. When I looked around at all the people there, it was sometimes difficult to tell who had Lyme. You know the "but you don't look sick" statements.  These brave Lyme patients pushed themselves to be there and smile, mingle, and show their support.

As I have said numerous times before, Heather was "lucky" that she had a diagnosis within two months of being sick. Sadly it wasn't quick enough to save her from the suffering that she's having and what we now know is chronic Lyme. We know that the six weeks of IV treatment was not enough to cure her. However, if you look at the IDSA and CDC guidelines, Heather received what they considered to be the ultimate treatment. Rant on that later.

To back up a bit, before the rally we finally met with a surgeon and they decided that she is going to have her gallbladder removed in June. After the surgery she will be reassessed and hopefully her body will be healed enough to begin additional treatment to cure her Lyme. 

Heather and I had always planned on staying for a few hours at the rally and then attending a three hour seminar held in the Dirksen Senate building. However after the appointment with the surgeon then attending the rally for a few hours, she was too tired to stay. So we went home to watch a live stream of the conference. Sadly, this nerd couldn't get the live stream to work, so we will watch a copy of it later. 

On a lighter and funnier note, Heather actually made me laugh out loud after the group "take a bite out of Lyme" photo. We were standing around talking and when I turned around Heather had manipulated her slice of lime into her upper row of teeth. It was one of her many bartending talents from her bartending days in NYC. When they were bored or trying to entertain each other and clients, they would take the garnish, tear out the fruit leaving the yellowish underside of the peel. Then, they would cut chunky and uneven teeth. 

So my adorable Heather, did this without anyone noticing, and when I turned around to see how she was doing, Heather was smiling with her fake lime teeth. I just love her spirit and silly side. Even though she was having a difficult time rallying at the rally, she made the most of it and I got a FANTASTIC photo op that made me smile. 

I've attached a few of the pictures from the rally. You'll see the group shot and then a few individual shots of the Lyme quilt and various people that attended and were key to the organizing this two day event in the DC area. Thank you everyone - from the bottom of my heart I appreciate ALL and EVERYTHING that you do to spread awareness.  Wish we could have been part of the protest in front of the IDSA (which I attended last year) but previously scheduled appointments and meetings prevented us from attending. 


This weekend, one of Heather's NYC friends, Maria, is hosting an event in New York City in Astoria on Saturday the 21st.  Heather won't be able to attend - but she will be there is spirit and on the banner that we sent up.  Thank you Maria for spreading awareness, but most of all, thank you for being such a good friend to Heather and paying it forward and thinking about others.


xo
Lisa

Hello - 1970s is calling....

Vintage Lisa - Circa 1977

I loved the 70s - but sadly I never attended a protest or rally. However, now I can release my inner 70's child and go the Lyme Disease Rally on May 19th at the U.S. Capitol.  Let's go over my checklist and compare it to 1976

1.  Long hair - CHECK

2.  Blue eyeshadow - CHECK - but it will be green (Come on - give me a break)

3.  Bell bottoms - um - sorry - no can do - we can blame that fashion on drugs and the invention of  polyester

4.  Sterling silver jewelry - CHECK - gotta love me some Alex and Ani

5.  Paraphernalia - hmmmmm - webster's definition is "miscellaneous articles, especially the equipment needed for a particular activity" - so CHECK - we have banners and business cards and green things :)

I wish Heather didn't have Lyme disease - but I couldn't pick a better person to attend this rally with. I love you Heather. We will continue this journey together and spread awareness. Game on DC - the Dolan girls will be there.  


I will protest and rally until we find a cure for this insidious disease. I may have been a straight A student my junior year (pretty amazing if you knew me when........), but I give Lyme disease a big ol' fat F


Oh what a year 1975 was - more fun than this
report card shows. More fun than I can remember.
Special thanks to my Mom for keeping this gem.



Link to blog about rally Link to my blog about Rally


xo
Lisa

Lyme Awareness Rally at the U.S. Capitol - May 19th 2016

Heather and I are going to the rally at the U.S. Capitol on Thursday May 19th.  She has a Doctors appointment in the morning - but we are hoping to be at the rally by 11:45.  We would love for anyone in the area to join us at 12:15 for the largest "Take a Bite Out of Lyme" on Capitol Hill.  Look for our banner to find us!!!!


From the Mayday Project site: 

This is the year for change and this will likely be our last chance to speak out before the new IDSA guidelines are published. Come help us get the justice we deserve.

On May 19 we are hosting a “We the People Rally” at the U.S. Capitol, calling on Congress for decisive action to address the out of control epidemic of Lyme disease, including more funding for research and Congressional oversight of CDC’s Division of Vector-Borne Diseases.

At 12:15 pm sharp, we welcome anyone participating in or nearby the rally, to join us for the largest "Take a Bite Out of Lyme" on Capitol Hill.

The following day we will hold solidarity rallies at IDSA headquarters and CDC headquarters. We are calling for treatment guidelines based on science instead of the vested interests of IDSA, and for Congressional oversight of CDC’s program for Lyme disease. We are also calling on CDC to recognize the true prevalence of Lyme disease in the south and other so called “non endemic” areas.

 SCHEDULE
Thursday, May 19
9:00 am – 3:00 pm: We The People Rally
6:30 pm – 8:30 pm: Memorial and Vigil
Union Square, Pennsylvania Ave and First St., NW

Friday, May 20
9:00 am – 3:00 pm: Solidarity Rally—IDSA
IDSA Headquarters, 1300 Wilson Blvd., Arlington, VA

9:00 am – 5:00 pm: Solidarity Rally—CDC
CDC Headquarters, 1600 Clifton Rd., Atlanta, GA

Dear Diary

Last night Heather had one of her awful nerve pain episodes.  It breaks my heart to see her curled up in pain, crying, and basically inconsolable.   I feel so helpless.  Heather is tough and has a pretty high pain threshold.  It's just not right that my vibrant and free-spirited 33 year old is in so much pain that she has problems walking and going up the stairs.  I can't even imagine what is going through her head as she deals with this chronic pain. She is doing everything that the medical team advices from meds, to diet, to exercise, to rest, to Epsom salt baths, lemon water........and so much more.

I have no idea how she feels - I can only guess based on hearing her cry and looking into her eyes.  I have never experienced chronic nerve pain, but I know it must be AWFUL.  It is a pain so severe that she says it feels like someone is sticking a hot metal rod up her feet through her calves. 

We met with the Lyme Doctor this week and they are adjusting her meds, adding supplements, and basically trying to get her pain relief.  Sleep is so important when someone is ill, so they are working on that too.  She hasn't started treatment yet for her Lyme because they have to deal with autoimmune issues that are affecting her tissues and organs. 

The waiting game to have the procedures performed, get the results back, then schedule the next procedure is quite frustrating and scary.  Right now it appears that she will be having surgery to remove her gallbladder.  As far as surgeries go, this one is pretty standard - but surgery is still surgery.  I just try to look back and remember what a fighter Heather was as an infant, during her two surgeries, and realize that she WILL beat this. 

Lyme disease sucks.  It doesn't help that her immune system is so messed up.  Heavy heavy sigh.

I love you Heather.  I am in constant awe of your strength and positive attitude.  It's OK to be scared, it's OK to get frustrated, it's OK to cry.

I am always here for you.  Forever.  Promise.

Thanks Diary - it helped to vent.

xo

Lisa

Slice it, bite it, suck it.......

Did I get your attention with my title for this blog?   


May is Lyme Disease awareness month.  Please join us in the “Take a Bite Out of Lyme Disease” Challenge.  The purpose of the Lyme Disease Challenge is to raise awareness and funding for improved Lyme Disease diagnosis and treatment.  

It's simple....
Sharing is key to spreading awareness.  Post away on social media!  Be sure to include #LymeDiseaseChallenge so we can find you!

It's a simple thing to do and trust me - the few seconds of a sour tasting lime will go away.  Lyme disease has no cure and in chronic cases, the patient is sick for a long time.  

So buy the lime, slice it, have your camera ready then pucker up, bite it, suck it .........and this is going downhill fast.....you know what to do.  

Do it for my Heather.  
Do it for anyone suffering from Lyme disease.  
Do it because you want to help others and spread awareness.
Just do it.

Make sure to share a Lyme disease fact and challenge your friends. Then post away on social media.  Tag your friends, let's make this go viral - in a good way.

Maybe, just maybe, we can raise awareness, raise research money, and ultimately find a cure. 

If you would like , donations could be made to the  ILADEF (International Lyme and Associated Diseases Society’s 501(c)(3) non-profit educational fund).