30 Things About My Invisible Illness You May Not Know

722629f4aa847cc715c213f8207bd724fight for my health

 

30 Things About My Invisible Illness (AKA: Ehlers Danlos) You May Not Know

1. The illness(s) I live with is: Ehlers Danlos – Classic and Hypermoblility types, Sjogren’s Syndrome, Fibromyalgia, and Lupus
2. I was diagnosed with it in the year: EDS in April 2015, SS in May 2015, Fibro 1994, and Lupus 2002
3. But I had symptoms since: varying symptoms since I can remember.  Usually blown off to being klutzy or clumsy or just awkward.
4. The biggest adjustment I’ve had to make is: having the people I care the most not understand what is going on.
5. Most people assume: I’m making excuses or that I am trying to get out of something when really I can’t do whatever it is that is being asked of me.
6. The hardest part about mornings are: Making sure my daughter is up on time and ready and fed and all that and I haven’t lost my mind in the process.
7. My favorite medical TV show is:  Chicago Fire
8. A gadget I couldn’t live without is:  Those handy squishy things to put over jar lids to help me open them.
9. The hardest part about nights are: SLEEP
10. Each day I take _11_ pills & vitamins. (No comments, please) RIGHT NOW IT’S 11 (TOMORROW I SEE THE DOC)
11. Regarding alternative treatments I:  I absolutely LOVE hot stone therapy.  I can’t afford it but once in a blue moon.  I think most alternative therapies do work for me.  You have to be rich to continue with them though.
12. If I had to choose between an invisible illness or visible I would choose: at this point, I don’t know which I would want…neither!
13. Regarding working and career: I miss working.  I have never really had a career since this hit me so early on in college.  I never got to experience a career.  That makes me terribly sad.
14. People would be surprised to know: There are still a lot of things I would love to do if given the chance.  If able to get pain under control and legs/hips = ability to stand or walk better
15. The hardest thing to accept about my new reality has been:  not knowing from one day to the next how my body will be responding to the weather, or the temperature or the light or sound, etc.
16. Something I never thought I could do with my illness that I did was: learn so much about it.
17. The commercials about my illness: I haven’t seen many here in Minnesota
18. Something I really miss doing since I was diagnosed is: running around, playing hard with my daughter, riding bike
19. It was really hard to have to give up: bike riding
20. A new hobby I have taken up since my diagnosis is: lots of walking
21. If I could have one day of feeling normal again I would: go camping and hiking, canoeing, boating, spend the day with my daughter out in the woods just having adventure after adventure
22. My illness has taught me: slowing down is ok
23. Want to know a secret? One thing people say that gets under my skin is:  at least you are still alive with your daughter.
24. But I love it when people: take time to laugh and joke and treat me like myself, like nothing is wrong.
25. My favorite motto, scripture, quote that gets me through tough times is: …I PRESS ON…..
26. When someone is diagnosed I’d like to tell them:  It takes a little while to adjust, but once you get your bearings, friends gather, new and old, and we stick together like glue and we gotta lotta living to do.
27. Something that has surprised me about living with an illness is:  there are so many supportive people that live far away that are just as supportive as the ones close by.  I love them just the same.
28. The nicest thing someone did for me when I wasn’t feeling well was:  She read to me.  She read me stories, all sorts of stories.
29. I’m involved with Invisible Illness Week because:  Invisible Illnesses need to be made aware of.  There are so many different kinds and so many different ones that don’t get the feedback that others do.  Take time to read about invisible illnesses.
30. The fact that you read this list makes me feel: blessed and honored.  Thank you. ❤

just thinking

Just something that popped in my head…feel free to ignore

How does one measure “quality of life”?
Do they measure it by the minutes you’re alive?
The days you “walk”?
The days you can eat?
What?

Because as it stands….I don’t feel like this is quality of life at all, but more like QUANTITY of life. Struggling to get things done only to become exhausted by simple things or being constantly in pain is NOT what I would consider QUALITY.

To me, “quality” emphasizes one’s ability to enjoy life–even it’s ups and downs. It means you aren’t wondering if tonight will be the night you stop breathing and your heart stops beating longer than a few seconds and don’t wake up the next morning. It means you can get things done without being half way done because exhaustion or pain hits and floors you. It means you are able to be productive at something for longer than a couple hours (IF you’re lucky). It means not having to beg the Universe or God to PLEASE help. It means not being judged by others that you’re overreacting because your stupid body wasn’t made right. Or even judging because your body just doesn’t work like it used to (which everyone expects you to do or be).

My whole life I struggled to be “normal”; convincing myself that all “this” was in my head. Well, it turns out I *do* have something wrong with my head and because all the evaluations and the doctor appointments, these invisible illnesses are real. I have always been clumsy, always falling down or tripping.  That is how I earned the nickname Grace from my family.

It’s all so frustrating to learn you have lived a lie your whole life and doctors made you think you were “crazy” or a hypochondriac….when in reality—you weren’t/aren’t. And because of that lie, your body suffers the consequences. Everything I ever hoped for or dreamed of was killed in an instant when the multiple diagnoses came out of the woodwork as I have gotten older.  Diagnoses that began when I was 17…and still continue today.   It’s hard not to get depressed when you don’t know where to turn or what comes next. The only thing I do now is go to doctors or stay at home.  I try very hard to keep up with daily living with my 10 year old.  I want her to experience music, nature, art, well, anything  that will enhance her life and help her to learn about the world.  I want her to always know she is loved.  I am pretty sure she knows this.  But reminding her is becoming habit.  There is huge part of me that wants to giver her all the things that I didn’t have growing up.

Limited or fixed income is hard.  It puts a crimp in many activities.  That makes the QUALITY of life more difficult.  I pray and hope that this pain doesn’t slow me down so much that  I can’t enjoy K’s growing up and becoming a young lady.

happiness is

Happy New Year!!!

It’s the last day of 2013 and almost ready to ring in the New Year….I would have done a year in review, like I did last year, but my memory is shot.  Something happened this year with my memory and I don’t know what it is, but my memory is as good as it should be.  My personal opinion is that it has something to do with lupus but I can’t prove that so who am I to say, I am not the doctor.  

Anyways, I want to thank everyone who has followed my blog this year and I hope to write more exciting adventures this next year.  I hope you keep reading and following along my adventure and journey to wholeness in 2014.  Blessings!!  Julie

Invisible Illnesses

I have Lupus and Fibromylgia and a few others that are hard to explain but they are all dubbed “invisible diseases”.

I had heard of the Spoon Theory in describing what it is like to have these invisible illnesses but didn’t totally understand.  So I googled it and found what I was looking for.  Thought I would share it with you all.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Support or no?

A question to any reader with a chronic illness…..  Question-mark

How do you feel about online or in person support groups?  Or even on FB, writing about your illness?

I see their purpose…giving people a place to discuss and support each other. After all, unless you are dealing with the illness, you can empathize. But a person does not truly know the ups and downs of the battle.

The problem that I see is that so many seem to be flooded with people who just want to have a pity party. Now, I am not saying that people can’t talk about what they are going through and have a little whine now and again. I do that here sometimes too. But, it just seems like some folks in this one group I have seen or on Facebook,  just don’t want to move forward. They let the illness define who they are.

Case in point. There is a group on Facebook that I have been following which posed a question about whether it is possible to live pain free with fibromylgia and or lupus or arthritis. Some stated that they were living a minimal to pain free life. Others seem to dismiss it as a pipe dream. I sensed that some seem to “hate” on the ones who were enjoying an extensive period of remission. Or, they just give up and give into the pain.

Why?  Why the pessimism?  Is it that we want what someone else has? Does it make some people feel better to make other’s feel bad about their remission? (I am curious to know from a few of my breast cancer survivor friends if this was true in their circle.)

I’ve had my ups and downs with this illness for the past 10 years (I was diagnosed in 2003).  I’ve been in and out of remission so many times, I often wonder when the roller coaster will end. I’ve bitched about the injections I have to get on a weekly basis so that I can function at at pain level of zero to 1 out of 10. I will not give up the fight.  I am going through another bout of a huge flare right now.  I see the rheumy in a week.  I don’t know what my next few weeks will hold or how many injections or times I will sit at the cancer/hematology center hooked up to some “stuff”.  But I am not giving up.

And, I certainly will not scorn a person’s ability to enjoy pain free living. That’s what we all want, right?

chronic pain and coping and life in general right now

6.7.12

pain and other stuff.  that is the topic today.

I have a couple other conditions which play into the pain thing for me.  I have Lupus, fibromyalgia, the beginning stage of Rheumatoid Arthritis. statrting stages of degenerative disk disease.  they figure it’s pretty much genetic related as I have many relatives with these things.  my sister is also in the early stages of RA.  pretty much have to figure out to cope with pain on a daily basis.  like most things, some days are really pretty good and others really suck.  depending on the weather, stress, etc.

i don’t particularly feel stressed out by all the crap going on in my life….with my plate full of stuff.  but my body i think is.  my emotions are pretty in check, reaction to the pain.  i don’t feel depressed, but i don’t feel really happy.  i am mostly content or at peace at this moment.  if that makes sense.  yes, there is stress with having moving going on, knowing katey will be with me in a couple weeks, school stuff.  but for me i find ways to make it manageable for me.  i exercise, which is very hard for me sometimes, but i make myself do it.  i get up and go swim just about everyday.  the water is warmer, which helps every joint and muscle.  with lap swimming i take my time.  i try to swim laps for 45 mintues before doing the water aerobics class.  this movement is good to make sure i don’t “freeze” up.  sometimes it hurts a bit, but then, i feel pretty ok afterwards.

i can’t do most pain meds due to having the VSG gastric surgery.  ibuprofin is something i have to watch.  hydrocodone works, but have to take it on a real regular basis.  docs aren’t sure if that is good for me.  my gp gave me flexeril yesterday….it helped the spasms and stuff.  i am awake at 4am….which is weird.  but starting to be a “routine” for me as pain wakes me…then i take another hydrocodone and try to sleep again.  sometimes it works to help me get back to sleep.  other narcotic meds leave in me in  a fog….usually most the day after taking them i HATE that.  so I use them very very sparingly….taking them after supper time….making me tired but the pain is maneagable. for a time.

today i head to the spine clinic.  not sure what to expect.  the x-rays taken last friday showed a “bump” or lump on my hip bone near my spine.  could be a calicum build-up…had that before on a couple other bones, they operate and shave it down.  but that it’s close to my spine is very scary.  also then my mind goes to the cancer thing.  my dad had cancer, it ended up going into his bones, etc.  my brain goes to town with it.  i am trying to not jump to conclusions just yet as i just found out about this yesterday with Dr. Bill, my gp.  this weather wreaks havioc on my pain levels too.  weird weather patterns this year has caused many flares.

i had therapy yesterday and we talked about the chronic pain and my lack of managing it.  Adam was a tad upset as it has a toll emotionally on me too.  I need to not let my high pain tolerance and take over and i find myself “grin and bear it” attitude pop in.  I need to listen to my body more which means accepting myself where i am and being more pro-active about this.  so a new territory for me to venture down.  i don’t like to let people know exactly how much pain i am in cuz i don’t want anyone to think i am a baby and cant handle pain.  does that make sense?  i know going to the spine clinic today is a first step in taking control of this pain stuff.  i don’t know what is going to happen today but i am praying that i find some answers and not a whole of doc wanting to medicate me.  i have tried massage therapy, hot stone therapy, hot tubs, saunas, swimming, chiropractic, healing touch, sacral crainal therapy….they work, but also the cost is usually out of pocket, insurance doesn’t cover this kind of alternative healing stuff.  they are effective for me, but i can’t always afford them.  i try to find deals etc when i can.  like next week after all this moving stuff, either next thursday or friday, i have a 90 minute massage, hot stone and aromatherapy appointment.  i got a great deal from Groupon for this.  cost me only 40 dollars for what is usually 120.  so i am trying but it isn’t a regular routine.  wish it could be, but i do what i can.

walking is hard somedays…same with sitting, standing and laying down.  i try to keeep moving around to make it comfortable. so that is where i am with this.  i hope to get more answers today.  oh, i started physical therapy for my knees this week.  maybe this doc will have them work on all my joints, esp my low back and hip.  i just don’t know.

trying to stay positive.  trying to stay busy.  trying to be ok with it all.  having wonderful friends like you guys is very helpful even if i don’t delve into the emotion and etc about all this stuff.  don’t want to bother anyone with my complaining.  lol

on another note, mom called me 2 or 3 times yesterday with some news regarding k.  she is dealing with swimmer’s ear.  so will be finding some ear plug things for her when she swims now.  she is getting her tonsils out finally on June 25.  that is the monday after vacation bible school for her up here.  the surgery will be in mason city iowa.  so will be going down after vbs on friday or saturday.  stay down there until monday late or possibly tuesday.  bring her back here with me.  the doc said i need to keep an eye on her very closely for 4-5 days.  lots of popcicles, jello, water, etc.  i am trying to make arrangements for the couple hours on tuesday evening and wednesday afternoon when i have class.  other than those 2 hours each day, i will be home with her.  lots of time to be close and be mom.  i wouldn’t worry so much about classes but that is my last week of class, gotta show up. yuck. my mom also set up an appointment with the lawyer that will be working with all the paperwork needed to be done to finalize my adoption back of k.  sounds weird but that is what i have to do, the reverse of what mom did.  iowa has a weird human services system.  here in MN it’s much more simple and easy to understand, i find.  but iowa plainly sucks.  to say the least.  but i will do the hoop jumping once again.

so yes, lots on my plate but i am not depressed about it.  i am maintaining using new and more effective coping.  therapy is good.Adam has helped me understand the why’s and how’s.  he offers suggestions to try to help make coping easier.  i don’t feel the need to return to the old crap that caused me more emotional pain.  i did slip back into some emotional eating stuff in the recent weeks…perhaps why the plateau is lasting so long. but i am aware now of what i am doing and am trying to make some better food choices…some days are better than others, but working on it more.  self image plays a huge part of it.  still have trouble liking myself.  go figure.

anyways, this is where i am at…what’s going on.  sorry for the “book” about it all.

i love you guys…my sisters and brothers in Chrst.  my support.  my friends.  i admire your courage and strength that each of you have.  it helps me to keep going too.  even when you have bad days…even when i have bad days, your encouagement of each other and me, inspires me to keep going and keep trying to get better.you have been a constant life line for me for many years now.  thank you.

ok…gonna try to get some more sleep before actually having to get up and start my day.

love and hugs to all

I can do this!!

 

Today I can do this.  I can do anything I need to, want to…..

Today I went to the YMCA and signed up.  I joined.  Never joined the Y in my life.  But this is as good as time as any.  Hit a little plateau in the weight loss thing.  Stupid knee has me hurtin more than I want to.  So I am gonna swim.  Bought a new suit today.  Even a smaller size!!  3 sizes smaller than the one I wore last year!!!  wooohoo.  Now to keep the weight loss and inches coming off.  I meet with a personal trainer to talk about goals and issues with my joints and stuff.  Going to get involved in some free water classes and try a yoga class too.

I go to Mayo on Wednesday for another MRI of my knee.  Yes, the one I had surgery on last November.  They think I might have something called spontaneous osteonecrosis of the knee.  They are not sure but the MRI will either confirm or deny it.  I hope it’s the latter.  But it could be caused by lupus.   Which is back for me.  My hair is thinner again and I have sores on my head and in my ears and mouth.  So I know I got it back at least a bit.  I need my ANA tested again.  Last one was positive.  I don’t know what all I need to do to cope with this but it sure is putting a crimp in my mental health.  I am tired and hurting almost daily.

Was looking for another counselor.  I have seen a couple of other ones but I didn’t like either.  So I called Adam back today and said, can I come back and work with you?  Hope he will call tomorrow.  I know there will be some limitations on the paperwork blah blah blah stuff, but I think I can cope with that.  All I deal with other than him would be Dr. Most.  the lovely shrink.  LOL   I know I need something right now.  Life is weird.  Got another rejection for a job app today too.  Gotta love that.  So I keep looking and applying.  I CAN DO THIS…..right?

I pickup K this Friday.  I am really excited she is spending a week up here with me.  I have lots planned for her and me.  We are going to have fun.  Then the following weekend it’s back to mom’s.  I will be with her for almost 2 weeks down there.  She has school.  I have no clue what I am gonna do for 2 weeks in hickville.  LOL  Gonna see if I can use hotspot for my computer while there.  I suppose read and sudoku or something.  LOL  If the weather is nice….go walking.  We’ll see.  I am just excited to do the one on one mom thing with her again.  I miss her something fierce.

Made some homemade chicken salad tonight.  It turned out pretty great.  Good eats.  Really easy too.  Hope Robin likes it too.

Just one last thing…..my friends rock my socks.  They are some of the greatest people on this earth!!!  The connections to the friends I have made over the years is amazing.  Even if we haven’t seen each other in many years, connecting back up is totally inspiring and beautiful.  Thank you my friends.  I LOVE YOU!!!  ♥♥♥