Transparency

I promised myself that in 2020, I would be transparent and focus on MY self care and removing the stigma of NEEDING self care.  

So....this week has been one of heightened anxiety and some low feelings for me.  A year ago tomorrow, I experienced something very traumatic that honestly shattered my sense of safety and left me feeling kind of emotionally and physically paralyzed for about 5-6 months.  

I'm better now, but didnt realize that something as small as the date coming up would evoke such panic and anxiety within.  I'll be being very kind to myself tomorrow.  Just probably doing some reading, listening to some soothing music and checking in with some people who nurture my soul.  And honestly...probably doing a little bit of crying and releasing some of the energy that needs to get out.  Thanks ya'll for loving me in all of my perfect imperfections 💜💜

It's Just One of Them Days

*its just one of them dayssssss*

I swear...its like the stars aligned and decided to throw me the double middle fingers this morning, lol 🖕🏽🖕🏽

Na'eem had a restless night next to me..hot as hell, tossing, sweating and then peeing me outta my bed.  Woke up running a fever of 103.1. 

Instantly get some motrin in him and run him a tepid bath while Imani tries to call the drs office and is put on hold.  While trying to cool Na'eem down in the tub, I feel a drip....drip....drip..on my back.  Look up.  Ceiling is leaking in 2 different places.  Not only that..but one whole section of the wall has bubbled up, so I dunno how long that leak was going.  Grab phone and call landlord to let him know.

Get Na'eem dressed in some warm pj's and under some blankets...Imani has now been on hold 20+ minutes...and gets disconnected.  Now I try calling....30 minutes on hold...still no answer.  Try calling back...repeat...30 minutes on hold...hang up.  Call the social worker to see if the phone lines are down..no answer, leave a message. 

Now it's going on 11.  Got the fever down some and he is sleeping.  

We were trying to have Na'eem seen this morning so that Imani could take him before she has to leave for work.  For once, she doesn't have to be at work until 4, so she could have gotten him to an appointment up until probably like 1.  But at this point, it's now 11...she wouldn't be able to get an appointment until at least 12:30-1.  So yeah....I'm frustrated.  And I'm hoping that Na'eem's fever doesnt spike again this evening or tonight while alone with both the babies.

Ughh...I'm tired.  Literally, this entire house has been since Christmas Day.  The babies have passed this virus back and forth between each other with no healthy time since Christmas, and I am just now getting over my health scare, and coming down with another cold.  FML.

It's Just One Of Dem Days

Soooo..the day in a nutshell....

Had a shitty nights sleep, battling a migraine and a kicky little one.  Woke up around 3:30 and couldn't get back to sleep, so sat on the couch reading for an hour before I got back in bed.  Got about 30 minutes of sleep before I was joined by a 2nd little one VERY early in the a.m.  

At around 8, Bryson woke up out of his sleep screaming and holding his ear.  He repeated this about 20 minutes later, so I knew we were looking at an ER visit for an ear infection.  

Bundled the boy up and set out...Mattapan to Children's Hospital on the T on a Sunday is NOT fun.  2 buses and a train, all on Sunday schedules, add to it that Bryson literally cried the ENTIRE trip.  But we got there around 10 I think.  By the time we got there, Bry was in full Autism meltdown mode.  A meltdown like I'd never seen him in.  It took 3 people to hold him down, just to get his vitals.  He would freak out anytime anyone came within a foot of him.  So we were put into a room right away.  

The nurses pretty much left us alone and Bryson was in and out of sleep.  The Dr came in and it took 3 of us to hold him to check his ears...badly infected.  The dr wanted to get a chest xray to rule out pneumonia.  

The xray was a whole nother kind of meltdown..they had to call in extra people and it took 4 adults to hold Bryson down to do the xrays.  I've never seen him like that and it really shook me up.  Thankfully, the xray was perfect and we were discharged soon after.

I think the meltdown just wore him out, because Bryson basically slept the entire way home.  We have been home for about 2 hours now and he is just now starting to get his energy back (I already gave him a dose of the antibiotics and some tylenol for the pain)

Lisa's Hospital Adventures

Long post ahead.  Soooo..Thursday morning, the boys were supposed to go to their first dental appointment, an appointment that I'd literally waited months for by the way.  And as soon as I woke up, I knew I was gonna have to get to the doctor.  

My asthma had been escalating for a few days, but controlled with inhalers and nebulizers...but as soon as I woke up, I was like NOPE, I'm gonna need some prednisone.  My Dr is very pro-active because he knows my asthma and how severe it can quickly get, so he has told me anytime the asthma starts flaring up, come to the office as a walk in, and he will order me some prednisone.  In and out.  SOOOO I get there.  They see me pretty quickly..within 15 minutes.  My Dr is not in, but that's no biggie.  The nurse brings me back, hears me wheezing across the room and goes to get a nebulizer.  I do a treatment.  She listens.  Goes for the supervising doctor.  He tells her to get me 60 mg of prednisone and another nebulizer setup.  I do another treatment.  They come back, tell me they are calling an ambulance and that from now on..go directly to the ER when my asthma flares up.  Ambulance comes..ambulance driver recognizes me from the 2 other times she has transported me from the dr office to the ER for the same thing.  Says..girl...from now on..skip the steps and just call the ambulance from home.  I'm trying to explain that I dont like to abuse ambulance or Emergency Room usage..I try to start with my dr office, but she was like..looka here girl...we are doing this every other month, it's not abuse..your asthma goes hard and you cant be out taking your time.

Soooo..get to the E.R.  Its busy as usual, so they put me in the asthma bay (a set of like 3 chairs with oxygen hookups next to them in the hall)  Sat there on a neb for maybe 40 minutes.  Then they decided they needed to get some magnesium in me via iv (it helps with asthma attacks or something) but my veins are shot due to so many hospitalizations.  So 4 sticks later, they call in a specialist..he gets it in literally about 45 seconds, but it's in my inner elbow sideways, so I have to keep my arm ramrod straight until I am discharged.  Then the dr asks me how I'm feeling.  I say I'm much better and that I know my asthma and this isnt a bad attack and I can handle it at home, and  they told me I was being admitted and they put me into one if the ER "rooms" (gurney and chair with curtains around it) Im sitting there like...wtf did you ask me for then????  There I sat..phone chargerless, tv less, foodless, drinkless) from 12-5.  I think the nurse came in maybe 3x..2 of them to give me nebs.  No pillow, no sheet, no water...hell, they didnt even give me a damn gown to put on, lol.  Finally at 5, they brought me upstairs to a room.

Nurse comes in, gets my vitals, starts a neb, does the whole 50 questions..and leaves.  I'm STILL sitting in my street clothes in a damn bed I'm supposed to sleep in.  I was in the room for 2 HOURS before I finally got someone to give me a damn gown!!  

So now I'm sitting here and all of a sudden, my stomach gets to cramping.  But not like..little cramps..like..I was about to give birth cramps.  They were coming like every 4-5 minutes.  I'm like..omg, I'm gonna be sick.  My face was burning hot, I was sweating..I was starting to do the rock.  Oooh lawd....This was not gonna be pretty.  And I'm not on a private floor.  I had a private room, but this floor has shared bathrooms.  Like 8 rooms share each bathroom.  And I am a VERY shy bathroom user.  I cant go outside my house.  But it was about to be drama.  And then I look up.  WHYYYY did this woman get brought up and admitted to the room next to the bathroom and she was under police guard and they were the 2 sexiest biiiiiig beautiful brothas in uniform ever??  I was like..oh wtf..now I KNOW I cant go to the damn bathroom!!!  When I tell ya'll,  I called that nurse and asked for some maalox so quick!!  I BET you, I never went to the bathroom the whole night!!  P.S.  Apparently,  a very upset stomach and severe cramping is a side effect of iv magnesium.  

Rest of the night was uneventful.  Oh wait..they did have to come in and start some kind of fluids in my iv all night because my heart was going too fast for too long and wasnt slowing down.  Nebs every 4 hours and a good nights sleep without dem babies.  My nurse brought me a charger, so I was able to charge my phone all night.  I was awake by like 4 something this morning.  Dr came in at maybe 9:30 and says..how are you feeling?  I say, I feel great, other than my throat being blown from all the nebs ( it's a side effect)  I said I told the dr yesterday that I didnt think I needed to be admitted.  He laughs and says...you shoulda said it more forcefully.  He tells me that I'm discharged but it will take a while.  No problem, I'm used to that discharge wait.  I settle in and watch Law n Order SVU.  Around 12, the nurse brings me my discharge papers.  But tells me she wants me to wait for lunch.  I'm like..is it about to come?  I'm thinking...maybe she just assumes my fat ass is hungry.  So I wait.  Now it's about 12:40 and I'm tired if waiting..put my coat on and get all the way to the exit.  Nurse stops me.  "You are breathing too hard.  Go back to your room and wait for lunch and then I'll get you a wheelchair.  I dont want you walking downstairs"  I dont know when I punked tf up..but I turned my simp ass around and walked back to the room and got back on the bed (she was right about the breathing..I cant walk more than 10 feet without getting tired..it takes me 3-4 days to bounce back after bad attacks) Finally at 2:00 they bring the damn lunch!  And I will be damned if that lunch was not freaking amazing!!  And I swear, I was eating my last bite of fish when the wheelchair transport arrived, lol.  She had even arranged for a voucher for a lyft to take me home because she didnt want me riding the buses home.  

The muhfuggin END of my latest hospital adventure

*taps the mic* Is This Thing On?

So one of my friends suggested that I write, and it reminded me that I actually do have this blog...I've just become lazy about updating it.  But I realize that writing really does bring me pleasure, and it helps me to clear a lot of sh.... junk out of my head space...so it wouldn't be such a bad idea to start back up.  Because lately...my head space has been a bit janky.

I guess I should do a sort of intro, even though I've had this blog for like ugh...10 years or so now (if you scroll back, you can read old posts) I know there may be some new readers who are new to me, new to my crazy life...and the crazy stories I tend to tell.

I'm Lisa...Lis...LiLi...all of the above.  52 years old.  I live in Boston.  Born and raised here, but I spent the years of 2008-2017 in South Carolina (mainly in Columbia) and also consider that home.  I moved back to Boston to be closer to my family and support system, as my health was getting worse (severe asthmatic, congestive heart failure and spinal stenosis)

I'm Mama to 3.. Aaron is 32.  Happily married to Laura.  Aaron was born with 2 types of malignant cancer and a syndrome called Epidermal Nevus Syndrome (where the body reproduces different types of cancer).  He also has Asperger's, which is on the Autism spectrum.  He was also born with some congenital birth defects.  His first years were basically one big hospital visit, between specialists, chemotherapy,  surgeries and emergency visits.  But he is doing awesomely now.

Next up is Aja Dawn.  Aja is forever 23.  Her life was taken at the age of 23 on June 13, 2014 in an act of Domestic Violence.  She was an amazing young woman, and I'll probably share a million stories about her.

The last of my biologicals is Imani.  She is 20.  We were told when was 2 that she would diagnosed as bipolar by the time she was 7.  Unfortunately, it presented so severely that by the time she was 5, we already had that diagnosis by one of the top children's psychiatry units in Mass.  She's had her ups and downs.  As I'm sure those who love someone living with bipolar disorder know, you have your good and bad days.

And lastly...we have Thing 1 (Bryson- 3 y/o) and Thing 2 (Na'eem 2 y/o).  They are the grandsons that I am raising.  Both have some health challenges that keep me pretty busy.  Bryson was born prematurely with gastroschisis (his intestines were outside of his body) He spent approximately 6 weeks in the NICU, where he had surgery to insert the intestines.  But as a result of the birth defect, he has short bowel syndrome.  He is also non verbal autistic.  In the last 6 months, he has learned SOOO many words though!!  And he uses them. A LOT.  Na'eem is my lil Mr Personality.  He loves to entertain.  Severely asthmatic since about 6 months old, he has spent a lot of time in the hospital, but it doesnt slow him down at all.

Whoooo... that's a lot of reading huh??  Warning...I'm wordy asf.  Oh yeah, and I cuss.  I'll try to ease up on the cussing in the blog though.  But I definitely talk alot.  I just wanted to give ya'll a backstory into who I am as a person and where I'm coming from as a woman, as a writer and as a human being though.  Some entries may be wordy like this..some may be short n simple.  

I still have to write an intro about my "forever kids".  They are not mine by birth, but I claim em as mine and I love them like my own, so I talk about them a lot.  Anyway....deuces for now.....✊🏼✌🏼

Sipping and Marinating

Happy New Year!  Welcome to 2018

As I sit here sipping on my coffee, I'm marinating on last night and how badly it went left.

Imani and I were having a good time, switching between the Dick Clark/Ryan Seacrest Countdown and the Steve Harvey one.  One of her friends calls and wants her to go out to a party with her and then stay at her house for the night (basically an all night party somewhere).  I say no.  Its already like 9, and I didn't want Imani out in the streets, especially at a house party with a bunch of young people.  i know how volatile that can get.   The subject gets dropped until around 9:45-10:00 and basically..it turns into a big thing.   I finally said eff it...you are gonna do what you want to do.  And she started getting ready to go.

The thing is...as I marinate on it.  I didn't want her to go because I was TERRIFIED.  I am terrified to let her go too far out of my sight because I'm terrified that she will will  be hurt or worse yet killed.  I tried to explain to her that New Years is a crazy night in the city.  I explained that I was scared.  But then I just removed myself.  I had to because I was going into a panic attack.

I know I have to work through these fears.  She has a right to grow up, and she will have to learn whatever life lessons she is supposed to learn.  But it is SO hard.   I live in a constant nagging fear that something is going to happen to Aaron or Imani.   She wants to grow up and venture out so badly, but still has very little idea of how the real world works, because she has been sheltered.

In the end, she didn't go out.  I didn't ask why.  She'd already showered and was getting dressed.  I thought she'd left, but when I went to check on the baby, there she was, in bed.  It was then and only then that I was able to release my fear and go to bed.  I feel like I SHOULD feel guilty for saying no and not wanting her out living...but I don't.  I just feel relieved that she wasn't out there at risk.  Ugh...This really is something I need to work though.

2017 End of The Year Wrap Up

Well, where do I start?  2017 was filled with so many ups and downs, changes and movements.  I'll just spotlight the lows and highs for me.

Lowlights of the Year include:

Saying goodbye to Bentley (our dog) and Onyx, Kitten and Larry (our cats) when we moved back to Boston.  Our hearts truly ache for the losses, but it was the only option.  Thankfully, Onyx and Kitten (now Trouble) have been rehomed with my forever daughter Char, after spending time with cousin Keisha and then Aaron.  So we can still at least visit them and see pictures of them.

My health has taken a real hit this year.  With multiple hospitalizations and one stay in rehab.  At one point, I was in a wheelchair because I could not walk on my own.  It was scary and it's been frustrating, but I am still standing!  And I have great health care.  And for the first time in many years, I know WHAT is going on with my body and WHY.  And those were things that I did not know.

Housing.  Without going into too much detail, the gist of it is that moving to Boston left us homeless.  This has been a very painful year for me personally.  It's difficult to go from being a self sufficient, independent, grown ass 50 year old woman, to not knowing where my family would be laying our heads.  Although the move to Boston was necessary at the time...I've hated the move and miss the South very much.   At the end of the day, I  was much happier with housing choice in SC and think it would be a better place for the boys to grow up in.

Not working.  This is the first time in many years that I have not been able to work.  I've finally had to accept that due to my health issues; working full time or even part time is just not an option.  As someone who began working at 14, this has been very hard to accept personally.

Now, for the positives!

Highlights of the year include:

The birth of my second grandson, Na'eem Xavier on August 9.  He is such a laid back little dude, whose smile will melt your heart.

The constant growth and changes that my grandson, Bryson Timothy exhibits.  His little personality is so exuberant and loving,even though he seems to be entering the "terrible two's" a few months early.  He and Na'eem have healed my heart and spirit in so many ways.

Being back among my family and best friend in Boston and seeing them on a regular basis.  This alone has made the harder times more bearable.  I have truly missed them and there is such a difference when I can just jump on a bus/train to see the people I love, as opposed to driving for 17 hours!

Auditioning for and being accepted into the Oscar Mischeaux Theater Company.  I've been away from theater and singing for too long now.  When I lost Aja, it just felt like my life force had been stripped away and I no longer desired to perform.

Being back among world class doctors and health care. For both Bryson and myself.  Although this year has been one of my worst health wise, the care I have received and the timeliness that I've received it in has been first rate.  The same goes for Bryson and Na'eem.  The healthcare they receive is exemplary

Being allowed to start up a Boston Chapter of Parents of Murdered Children.  This was something I'd hoped to be able to do and there were many steps, but I accomplished my goal.  I look forward to growing the chapter and making connections in Boston so that the chapter can reach anyone who needs it.

Overall, it's been a year of change, growth, sadness and fear, but also of hope.  I have hope that 2018 will be another year of change.  Change for the better.