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
