My Knight in Shining Cowboy Boots

This photo is husband,  Rob and daughter, Jackie, at her condo in downtown Chicago. That's Tumbleweed, our golden who passed last Jan. We have a new golden puppy now named Thistle!

I have a pretty amazing husband. We’ve been together 22 years now, wow!  This September,  we will celebrate our 20^th wedding anniversary. I know, at my age, that isn’t a record or anything but for what we’ve been through together, it’s pretty amazing to me.

I actually got stuck with that AIDS needle and diagnosed before our wedding. I told Rob at the time that I wouldn’t blame him a bit if he didn’t want to continue our relationship, as a matter of fact, I kinda preferred at the time that he just go away. Naturally, I was pretty upset and the docs had given me about 6 months to live at the time, due the massive amount of virus I was injected with. Rob said no, he couldn’t leave me, he loved me and it would just be wrong to abandon me when I needed him most. It was a rocky start to a marriage, let me tell you.  Back then, the only drug available was AZT and it was nasty. The docs put me on a huge dose because of my circumstances and I think they were really just humoring the walking corpse they thought they saw in their office. Over the years and the clinical trials I did back in Baltimore at Hopkins, I was so very sick, I tested just about every single drug that is used by patients today. We now know that that was a stupid way to go…it is why I’m resistant to everything now, but the docs were fumbling back then and people were dying like flies. And I spent a lot of time calling Ralph on the porcelain telephone, wracked with chills, totally exhausted…ah, testing new pills is fun! Most people don’t realize that most of the drugs used to treat HIV are chemotherapy drugs that didn’t quite work out for other things. Only lately have they become specific to targeting the virus.

One of my drugs that I just stopped taking, Norvir, (google it for giggles and you’ll see) is so toxic, there are 27 other common drugs I can’t take while on them and the MAJOR side effect list is massive and ungodly. We once spent one of our vacation trips coming out here to the West with me alternating between drooling half unconscious and vomiting (when the compazine wore off) because of  Norvir! It has to be kept refrigerated, too, so I had to keep it in a cooler, iced at all times. I barely remember that trip….but I do remember that when I was conscious, Rob had me laughing. And, he made sure I was good and strapped in when we were fishing…

Back to Rob…most people who know him think of him as a gruff, unbending, kinda humorless man who is always complaining about something.  Many who meet us as a couple, pull me aside and say “Really? THIS is your husband? You are so outgoing and cheerful and he’s so quiet… HA….Once he gets to know you well, his humor comes out and you see why I married him. Plus, people, do you really think I’d stick around a dull, uninteresting guy?

Sometimes, I actually lose my sense of humor, yes, I do. Rob always comes to the rescue, finding the humor for me when it’s hidden from me.  And he’s so generous, it’s obvious to me that he’s thinking about me all the time.  I now know that when he’s upset, it’s usually because he’s worried, not mad. When he’s quiet, he’s coming up with solutions, not brooding.  Yes, his negativity gets to me on occasion, but if we were both Pollyannas, that would be icky, like living in a candy bowl, probably.

The best thing about Rob is that he pushes me. I can spiral into a mushroom on a log in no time flat, especially in the winter, when it’s 10 below zero.  He pushes me to get out and do things. Even if it’s just to go visit and have coffee with girlfriends, or go for a walk  with Thistle, our golden retriever puppy, which is more in line with what I do these days. When we first moved here and I was younger, he’d get me out hiking on pretty days up in the mountains, until I’d had pneumonia too many times and lost too much lung function.

Another thing he does and I don’t think he knows I know about it..wow, how grammatical was that?   He always has a trip planned for us.  As soon as we get back from a photo adventure (He’s quite an excellent photographer and sells nature photos) or a vacation, he’s planning the next one.  I know what he’s doing…he’s keeping me focused on the future,  the dear man. Sometimes, that trip or that party I have planned is the only thing holding me together and he knows it.  And, being a Planner by profession, he’s very good at it! You are almost there, just by what he plans.  He has our itinerary all mapped out, where we’re stopping for lunches, what things we’re going to see and he prints it all out for me so I can dream about it til the time comes.

Our next big trip right now is to Utah and Arizona in April. We are going to photograph the wildflowers blooming in the desert and see the cactus and drop in on the Grand Canyon.  I have some awesome friends from FB who are Native American that live in Sedona, AZ and own a Spa that are expecting us to drop in, too and a friend of ours from Buffalo that moved to Wickenburg, AZ has  barstools down there with our names on them. Gonna be an awesome trip and I am already there in my mind's eye.

Rob is a workaholic…but I think he’d give up a lot of it if we didn’t have so many medical bills. Luckily, he turns 60 this year, and will finally get his military retirement from his 23 years as a Navy Chief..  I hope he slows down but I won’t make him because I know this is his way of showing me how much he cares.  I hope each and every one of you find a soul mate like I have, who will love you when you are ugly and rejoice with you in your little accomplishments….

This is Windy Thistle with me hiking up in the mountains...

Of Pills and Produce

Yesterday afternoon, after all the snow finally blew away, I went to Sheridan, 32 miles north of here, to pick up my prescriptions at Walgreen’s.  Bet you think that’s a long way to go, but I figure most people in big cities probably spend the same amount of time in the car as I do. That  32 miles I do is all I-90, with maybe 10 cars I see, at 75 mph, getting me there in less than 30 minutes, unless the roads are bad. Yesterday, the roads were fine, a few snow snakes had made slick spots, but all in all, just lovely considering it’s January in Wyoming!

Around here we stock up every time we go to Sheridan in the winter because you just never know when we are going to be hit with a good storm.  I say “good” because I just love winter. Call me crazy, I know. But here’s the thing…you can put ON more clothes when you are cold and you can take a nice hot soaky bath…but when it’s hot, you can’t rip off your skin, you are just HOT.  To me there is a beauty in winter, a starkness that cries out to me. I like the way the dry snow around here twinkles like it’s glitter and that when you shut a door the snow just falls off. I like walking through the woods and knowing that if there’s a moose or an elk or a (God forbid) mountain lion, I’m going to see his tracks before I accidently get too close. Oh, and we actually have snowshoe rabbits around here!  Their tracks are so cool!

Another thing I like about winter is that we get our little town back for a while from the tourists. In the summer, Buffalo is bustling with people from all over, but in winter, it’s so quiet.  We all wave at each other, glad to see that we recognize the faces in all the cars again. Everyone rides around with one hand at the top of their steering wheel and you’ll either get a full set of fingers lifted at you or if you are going up a steep hill in town, it might just be an index finger pointed straight up in greeting. But, it’s an acknowledgement  that “Hey, there’s a local!”  We do it a little more desperately in the summer time, when our tourists are stopping for no apparent reason, causing us to brake and curse, then wave nicely (we do want them to drop their money here)

Anyway, so I went to get my meds. I’m hardly on any at the moment.  My choice.. and the fact that my nasty little companion, the virus, is now resistant to everything they’ve invented so far. I’m only taking Cymbalta and Topomax for my neuropathy now. If you have this problem, let me tell you those are wonder drugs.  I also still take Acyclovir to keep me from blooming in shingles (I got them in 1998 for the first time and now blossom every spring with them, despite the drugs) and Dapsone to keep me from getting a certain deadly pneumonia that is lurking in my body, just waiting to re-appear.  Other than that, I only take Garlic, Biotin, Green Tea Extract, Zyrtec (for allergies) CLA and Alpha Lipoic Acid.  I did a clinical trial back at Hopkins years ago because I got diagnosed with AIDS related dementia (no, it’s nothing like alzheimer’s) and I was really having memory problems.  The kind where I’d be driving my stick shift car and look down at the stick and wonder what the hell THAT was for.. for just a few seconds before it came back to me. The docs explained that my neurons are not communicating correctly.  Anyway, I did this trial and they used the ALA and CLA in high doses.  It actually has reversed my brain problems…I don’t think I’d be able to write if it didn’t, eh?  My MRI still shows big areas of damage in my brain but except for forgetting people’s names a lot and I can’t remember phone numbers….I  do pretty well.  I do forget words a lot but they come to me, if Rob will just give me a minute to think it thru…ha, that’s another story…he’s always finishing my sentences, the turd!  Luckily, both CLA and ALA are over the counter now. I used to have to buy the powder and stuff my own pills because I need to take 1200 mg of the ALA. When it first came out over the counter, you could only get 25 mg caps, that’s a lot of freaking capsules to swallow a day!

You’ll notice I didn’t mention taking any vitamins? Doc says you should never eat vitamins in a pill. You should be getting all you need in your food and your body really only recognizes that anyway. You are just wasting your money on all those vitamins. Eat an orange, steam some broccoli.  I get all my vitamin C from Cayenne Pepper. I put it on just about everything now. Took me a bit to work my way up to more than a dash (it’s HOT) but now I don’t like food without it.

Another day, I’ll talk about my diet.  In a nutshell, I don’t eat anything that comes out of a package.  I only eat fresh fruit and veggies and greek yogurt , a tiny bit of cheese and I only eat chicken or fish twice a week.  I don’t eat any red meat unless I go to the Invasion Bar in Kaycee where they have the best burgers in all of WY….a girl can only be so deprived. But I really pay for that.  Once you stop eating all that dense stuff, your body becomes accustomed to the “lightness” and you get very sick from meat.

Anyway, I’m seeing here I’m starting to ramble again.  Thank you all for letting me into your lives today. I hope you have a wonderful day and treat everyone you see with kindness….

Remember…Leave a fingerprint of your humanity with a stranger today - a smile or a kind word. It might seem as worthless as lipstick on a napkin to you, but it may linger as a tattoo on someone's else's soul. We do not always know who needs for us to exist in any given moment in their lives, in order for them to make it through another day.~unknown

Cold Thoughts at 2 below Zero

I’m sitting here at my computer and it’s 2 below zero outside.  The kinda cold that makes sure you are well aware you are alive when you go out in it.  It’s funny..when I first moved to Wyoming,  I thought the winters were going to be much worse than they were in the East. They really aren’t, that humidity that’s lacking here makes all the difference.  When the sun’s shining and it’s 10 degrees, if there’s no wind, it’s almost balmy! And, I discovered that you can go out when it’s below, say 15 degrees, and blow those bubbles that kids get in the bottles with wands, and they turn into crystal and just land on the ground intact.  Just a little observation…..another humorous one is that if you go out in below freezing weather and you take a big inhale through your nose, your buggers freeze!

Yesterday, I was totally blown away. My friend, Tre Surbeck, from FB, sent me a link she received to a song that a woman wrote and sang and posted on Youtube yesterday.  This woman, Rita De Cassia Perez, is a spiritual songwriter, living in Australia, who has been writing and singing since the age of 6. Evidently she had followed a link to this blog from my friend and was moved to write me a song. I’m going to try to post it here to share with you.  It is hauntingly beautiful and I don’t know how she was able to capture so much of me.  I am not going to go into my spiritual beliefs with you. I think that what people believe is personal and between them and the Creator.  I think that you should “walk the walk” and there should be no need to speak of it.  I’ve found that the louder you preach, and the more you are judging others….the less time you tend to spend on actually being a good person. My birth dad was an alcoholic turned bible thumper Pentacostal preacher….I like to say he picked up the bible with equal fervor that he used to enjoy the bottle. He ended up a bitter, scared man, broke because he gave all his money to Jim and Tammy Faye Baker.  I  visited him on his death bed in NC, we hadn’t spoken in years because he was always “condemning me” and was surprised when he told me was scared to die.  He had mesothelioma and could barely breathe. I told him “But, Daddy, you have that sticker about the Rapture on your car and all you talk about is being with Jesus..aren’t you glad to be finally going home?” He had no answer.  I told him that it was okay to be scared but that it would be okay.  He died about 2 hours after I left. It still puzzles me to this day.

I’m not scared to die. I’m not scared to live, either. Having a bunch of death inducing illnesses does that to you.  Notice I didn’t say terminal? We are ALL terminal! We can’t escape death. I wish everyone could see life through my eyes for a bit…when you aren’t real sure if that sniffle is going to turn into something that will keep you in bed until the end and the end could be a week away….you really start to realize that every tiny thing counts. Like, I make sure I smile, I smile ALL the time…and I notice that someone walking toward me may have a really grumpy look on their face, but when they look up and see me smiling, it’s like a curtain opens and …..they smile back! When Rob starts arguing with me and I see we aren’t going anywhere, I just look at him real serious and  then I SMILE and (whether at the moment I feel it or not) I say..Do you know I love you more than life?.....guess what? Argument forgotton.. I mean, we always use that cliché “Life’s too short” but do you really “think” in those terms?  Is that “something” that’s getting under your skin really worth getting all hot and bothered and ruining your day? I thought not.  Now get out there today and smile at some people.  It will do them good and surprise, surprise..you’ll find you feel a heckuva lot better about yourself, too.

Love & Light

Song "Out There, Somewhere, In the Deep Blue Sky"

The Little Town with the Big Heart

Buffalo is the greatest little town. When we were coming out west on vacation 17-18 years ago, we were always headed up to Flathead Lake in MT to charter a fishing boat to catch and release those big old lake trout.  We were definitely leaving Maryland because the air and population were quickly killing me with no immune system. We had sorta decided to move to Missoula, MT but every time we would arrive each summer, it just seemed exponentially bigger. That’s what we were trying to get away from.  Because of the mileage, we always stopped twice in Buffalo, on the way there and again on the way back. We always stayed at the Wyoming Motel across from Col. Bozeman’s so we could get a nice little breakfast before heading off again.

So, we’re sitting in Bozeman’s having breakfast and I tell Rob that I don’t want to move to Missoula, it’s turning into what we’re trying to leave and he asks where would I prefer? I say “What’s wrong with Buffalo? It has everything…library, hospital, POOL, mtns, YMCA…heck, even the bartender down at the local bar (Century) remembers us every time we come through town.”  So we head back east and start planning. The following year we come out and as we reach a pullout right in front of the Bighorns, there are 3 rainbows stretched across the valley floor in front of Buffalo and those big shining mountains!  Three years later we moved here and Rob got a job over the phone at Col Bozeman’s, the very place that conversation took place! It was hilarious, Rob has always worked local gov’t but he was awesome with the restaurant staff. That carried us thru for 2 years until he became the first County Planner for our 4,186 sq MILE county, which he does to this day.

Buffalo is a small town. Now most of you, when you think small town, you know there’s another one in another mile or two….not in Wyoming! When that highway sign says “next services 60 miles” you sure better take heed, cuz the only thing you’ll run into maybe a pronghorn antelope or two thousand but no gas, no people.  Buffalo (pop 4,100) is 35 miles from Sheridan (pop 14,000) and 45 miles from Kaycee (pop 230). There is NOTHING in between except ranches and wildlife.  Sometimes, when they close the highway due to snow, it’s a lovely feeling knowing you are absolutely cut off from the rest of the world!

Now, the people of Buffalo…wow.  Awesome folks and we got every kind here. The locals who have lived here all their lives are salt of the earth, hardworking, honest, loving, give you the shirt off their back sorts…real cowboys and cowgirls, who work very hard to keep their ranches going. Then you have the ones who have sought refuge here, like us, and love it just as fiercely. We have a huge artistic bunch here..potters, painters, sculptors, photographers.  And, we have the biker group, who love to ride in the mtns and like living close to Sturgis. And then there’s the outdoor enthusiasts, who have every implement of mass distraction..snowmobiles, snowshoes, 4 wheelers and of course, we all hunt, pretty much. But those of us who live here only hunt what we eat. We have a nice population of Moose, a large pop of Elk and gorgeous mule deer, white tail deer and more pronghorn antelope than anywhere in the country. We also have a pretty transient population of workers that come thru to work the methane fields and mines, the good ones stay.

The amazing thing is that all of these people get along…the rednecks and the stiff shirts, the bikers and the cowboys, the ethereal artists and the rough rodeo stock and we actually LIKE EACH OTHER!

I was, at first,  afraid that my having AIDS would not be looked upon kindly here, but me being me, couldn’t keep it a secret…that’s not me. It was 1998 when we first moved here and education was still sporadic as to transmission and such, so I was very hesitant. But I dove in anyway.  And guess what, no one had a problem!  One old guy was telling AIDS jokes in the bar one night and Rob very gently pulled him aside and told him about me and the poor cowboy about imploded and apologized so much I thought he was gonna keel over. He still comes up to me every time I see him and sincerely asks how I’m doing. Sometimes the best education is a walking one! It still amazes me when someone I’ve known for years says they didn’t know I was sick…..this town does have it’s own gossip pipeline, if you don’t know what you’re doing, just ask your neighbor, he’s got it all written down….

Well, I could just go on and on this morning but I’ll let you rest your eyes a bit for now. All I have to say about Buffalo could never be put on paper, you have to see it for yourself. I’ve never lived anywhere as long as I’ve lived here and this is HOME to me and the people here are my family, every pea-picking one of them. When someone’s in trouble, we all gather the wagons here. We just had a benefit not long ago for Joe Jarvis for medical expenses and the first item up for bid at the auction was a pan of cinnamon rolls…..went for $600…..that’s Buffalo!

My Awesome New Doc and the hilarity behind it

Kinda new to all this blogging stuff but I really think I have a lot to say. The last two posts were things I’ve written in the past and posted on FB, which has been my outlet for the past few years.

Living with AIDS in Wyoming has been difficult and easy at the same time. There are no close infectious disease physicians here and the general practitioners do their level best to help me but they are afraid they are going to screw up.  I’m constantly caught between the two.  I was having to go to Billings, Montana for treatment, which can be difficult in winter.  Because I’ve had this darn disease so long and was on so many clinical trials at Johns Hopkins back in the early 90’s, my virus has become resistant to just about everything.  I got into an argument with my ID doc about 6 months ago because, although I was failing on the drugs, she wanted me to continue on them anyway.

They make me very sick, I told her, and if they aren’t working, why should I take them? They cost around $3,000 a month, too. Granted, I have insurance, thank goodness, but with my co-pays, I still pay around $300 a month. Why would I continue to take pills that a) make me sick b) aren’t working c) are expensive???  Well, she told me that if I wasn’t willing to stay on them, she wasn’t going to do any more bloodwork!  Who works for whom here?

So, a new medical person comes here to Buffalo, a really nice Nurse Practitioner, who married a great cowboy I know.  I decided I’d give her a try. I really like nurses..surprise, surprise, being one myself.  Well, before I could make a “well woman” visit to discuss all my myriad of ailments, I had a rather hilarious event happen that made us meet a little sooner than expected!

I had gotton my husband, Rob, a new camera for Christmas and he was just dying to go check out the eagles on the prairie and see how it worked.  So, we all bundled into the F250 Super Duty, with fresh cups of coffee and headed off!  As we are driving, I decided I needed something out of my purse and instead of putting the coffee cup in the cup holder like any sane person would, I put it between my legs…..do you see where this is going?

The boiling cup of coffee spilled right into my lap, I’m screaming for Rob to stop the car, he’s not sure why…finally get him to stop…I do a stop, drop and roll out of this enormous truck, landing into soft, deep snow (thank God) but not before sustaining some serious burns between my legs…..ouch, ouch, ouch!

Anyway, so I meet Sandy Ham, NP with 2^nd degree burns all over my legs and hoohah…not a dignified way to meet your new medical savior!  She and I discussed what had been happening with the docs in Billings and she told me that she had worked with tons of AIDS patients in Dallas before coming here and that she understood that we all have our own way of dealing with the disease and that if I choose to or choose not to take meds, it’s my decision…..OMG!!! So, we are now embarking on a new odyssey together!  My latest labs aren’t near as bad as I was expecting.  My t-cells are 77, having been as low as 3 (I named them Manny, Moe and Jack back then) and my viral load is only 75,000, which ain’t too shabby.

I will go into my diet some other time but suffice it to say I am mostly a vegan now although I do love BACON! I don’t eat anything that comes out of a box or can and although a vegan I eat no soy as I’ve heard it can disrupt your hormones.

Anyway, enough for the moment.  Hope you enjoy this and feel free to write me.

"Acting" Healthy

I am a very good actress. “You must be doing really well!” and “you don’t look sick” “seem to be all I hear. Is this good? Most times I take it for the compliment it is, smiling, knowing exactly what it doesn’t mean. I “act” like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside is that there is no trophy, there is no prize, I just end up alone with my feelings and everything I have kept inside. I act like I don’t care- but I do. I act like I am not scared, but I am.
There are those people who walk in a room and you know you want to hang out by them. I have the amusing stories. I get groups of people up and laughing. I walk in a stranger, and leave with everyone knowing my name. What they don’t know is that this really isn’t me. What you see is a very calculated illusion of the woman I want to be. I want to be everyone’s friend. By all means I hate the word illusion. I hate the tone it puts out there for others to decipher, but being plain old Lisa is worse.
The illusions started small like dressing in a nice outfit and constantly running to the tanning salon to get rid of that “sick pallor” I really have underneath. They have continued with constantly checking my gait when I’m walking, pretending to stretch slowly when I get out of a chair so as not to draw attention to the fact that my legs have decided not to work at the moment. The worst is constantly medicating myself so I don’t scream in pain or throw up when I smell a strong fragrance.
The truth is, if I were to ask you if you wanted to hang out with me – I know I would not be your first choice. I am not saying that to gain sympathy. I am saying it because everyone wants to mingle/ hang out with the sick girl— But God forbid something grows out of that chance meeting…. what now? Now I need to worry about if this person can handle my life, my choices, my energy highs and lows, The billions of things I am forced to obsess over on a daily basis. Normal healthy people obsess over shoes, shopping, what to eat, make up, TV shows, whatever. Don’t get me wrong… I enjoy all of those things too. I just can’t obsess, because I quite simply do not have the energy or time, or dependable pain free day to count on. I have no choice, I have to live my life different from everyone else around me. I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods of time? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all.
I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that only I  speak. There are times when I do let go and speak…..to my sick friends and it feels like a light bulb has gone off – or maybe a switch has been turned on – but I feel a level of understanding and pure comfort around the people who understand both me and the “acting” me. They know me both. They know that with me– you get the real and the fake- just to survive. If you are a good friend you can dig through the illusions and the crap and find me somewhere inside.

I hate people seeing me when I am sick and especially when I am looking sick. I really hate being pale, with faded eyes and with splotchy skin and bad hair. At least I know that some of these things are things I can work on, but others- they just are. I can’t make this big red blotchy rash go away. I choose what to wear based on how bad I look. Can I safely drive there, will the people there want to see me and be happy or excited? Will I be able to leave without any financial issues or friendship ramifications. I hate walking around in public with a limp, or worse, a set of crutches or a cane. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane. I hate that I don’t know a cooler reason.
Big bags are trendy right now, which is great and very convenient for me as in this role I am playing. I carry a big bag that hold lots of stuff. No one would ever know what is in my bag. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I bring emergency phone numbers, I bring EVERYTHING.
I do love my life, but I hate a lot of things lately.
I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it’ a “when day” and not a “someday” and it gets closer and closer.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate that my husband’s family must think that he made a bad choice for a mate. I hate the term “damaged goods”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) they will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and pain.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Dyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.
Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.
So I don’t let them. In a funny way this puts me more back in control. I get to pick who knows the real me. I get to pick who to share my soul with. I decide who to let in. This isn’t a pride thing for me. I don’t worry about people thinking I’m weak because I know I am stronger then I can even imagine. Despite my disease there has been nothing in my life that I didn’t want to accomplish that I didn’t find a way to.
My main reason for hiding my disease is that I don’t want a watered down life. I don’t want the simplest option given to me because somebody thinks I can’t handle any more. I want to decide.
I want you to like me and love me because I am a great person, not despite the AIDS & MS- but maybe because of it. Maybe having this disease taught me the skill of being a chameleon, mixed with the communication skills of a great counselor, added to a touch of structure and organization from living by the clock and the pills. Maybe I am cautious because I am scared. I live in two worlds- the world of the healthy- where I put my best face out and do anything my heart is set to and I also live in the land of the sick. Here I am understood, but I don’t have that much fun. I worry, I rest. I follow rules, and I live a life in pain. The unfortunate thing- is you really can’t live for very long in two worlds. It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.
I am doing my best.
I want to have one world with one life- no acting- just me. I make no excuses any more for my choices, my feelings, my health. I am trying. I am me.
I wish I could tell you all this and more, but sometimes I think the illusions are easier for you to live with. Let’s make a deal, you can pretend I am healthy, and I can pretend I am happy. I am sure it would work for some time… but would it really be working? Do you really care “How are you feeling” when you ask? There are so many things I wish people knew about me, but I won’t say, because you don’t ask and when you do, you’re not truly listening.

Not exactly an introduction but here's me!

Okay, so I got some bad news, it’s not the end of the world, it’s happened before, lots of times, really. The latest is that my viral load has gone from 400 copies to 79,500 in 2 months and my t-cells (immune system) has dropped from 299 to 77. What this means is that my virus has gotton extremely active again and the meds have stopped working altogether. This time though, I’m on what they call “salvage therapy”, the end of the road…there are no more drugs in the pipeline to put me on. I’m resistant to everything out there now. Damn virus…it mutates, you know. Finds a way to keep replicating despite the $3000 worth of poison I shove down my throat every month.

Now, you might think that I’m all depressed about this but really this is just another little bump in the road as far as I’m concerned. I’ve battled worse, far worse really. I’ve been dealing with this stupid AIDS virus for 20 years now and I’m just darned happy to still be here.

Six years ago I got another nasty surprise by being diagnosed with Multiple Sclerosis as if AIDS weren’t enough to be dealing with. Of course, the treatment is the exact opposite so there’s nothing I can do about it, except walk like a mangled freak when I’m tired and pop more pills for the neuropathy that comes with it. I have bought some really cool canes but just haven’t gotton the guts to be seen in public with them yet, lol.

Then, as if THAT wasn’t enough on my plate….I started getting lower back pain about 4 years ago, went to the docs and found out that it wasn’t my back, it was two tumors, 6 cm in diameter, sitting on my renal arteries on either side of my aorta…called retroperitoneal liposarcoma. Guess what…inoperable…well they could operate but the docs said I wouldn’t survive the surgery or more to the point, the aftermath of possible infections afterward so they sent me to a oncologist that is also a naturopath. I won’t go into all the strange things she put me on but I am now a vegan, don’t eat fat, sugar, things from boxes, basically only fresh food. The good news is that the tumors are basically undetectable now. Thanks, Dr. Ru!!

The reason I’m writing all this is that I’m not mad, just confused. I feel healthy, I look healthy! I exercise, I work in the garden…I have a full life, wonderful supportive friends and family. I must still be here for a reason, but I just wish the Creator would give me some sign of what exactly is going on and where I’m supposed to go from here. Don’t feel sorry for me, don’t give me those damn puppy dog, sad sack eyes when you see me and ask how I’m doing. And, for Pete’s sake, don’t look at me and be jealous of something I have that you don’t….my husband works 4 jobs to try to give me as much as he can and as many experiences because we don’t know what tomorrow will bring.

If you have good health, be grateful…it’s worth a lot more than you probably realize. All the money in the world can’t buy you more time in this world. Go out and really look around you! Enjoy nature…really see the birds going about their lives, listen to the grass grow, watch a mother and baby moose in the woods. Lay in the grass and watch the clouds speed by. Make an effort to make others feel good, regardless of what’s going on in your life.

Folks, that’s what’s life’s about!!!