Rare Disease Day 2021

 

I started a thread on Facebook, which can be found here. I suspect I won't see a lot of interaction on it due to this being a Sunday, and a lot of my friends aren't on the book of face on weekends. That's fine. I am easily overwhelmed these days, and my head is constantly swimming in fog.

I'm disappointed that I haven't blogged much this month. I do still have a couple of things to catch up on, and I will. For now, I'm better off lying low. You know where to find me if you want to talk.

In conclusion, I'm still here. I'm glad you are, too.

2021 is 2020 2.0

Or 2020: Part Deux if you're a Leslie Nielsen fan.

If you've seen my posts on social media, then you know. I was taken by ambulance to the ER, where I was diverted to the regular waiting room, where I screamed, threw up, and peed myself for many hours. Kidney stones, kidney infection, and pain-induced Gastroparesis brought a trifecta of pure hell. I truly believed I was dying right there in front of everybody. I nearly lost consciousness from the pain. And this went on all evening long because there were no available beds.

If you've been irresponsible about COVID, just know how much you've contributed to my new emergency room trauma...as if I hadn't had enough of that already.

When I finally was seen, it was my favorite ER physician, Dr. Jah. He's the sweetest, and was sympathetic of my misery. It took a long time to get it all under control so I could stop wailing, but it finally happened. I was released as quickly as they could throw me out of there. My uncle is a saint, and got out of bed in the middle of the night to drive to the city to retrieve me. He drove us to the 24 hour pharmacy, bought the meds, and took me back to his home on the bayou. I spent a week with my aunt and uncle being observed. The stone(s) didn't seem to pass, but I was functional enough to go home so they could resume their family plans out of state. I am extremely thankful they were in town and willing to be there for me in this unbelievably challenging setback.

I'm still in severe pain. Some days are more manageable than others. I've ordered supplements galore to try to help dissolve the stones. My urinary tract is on fire...it still hurts so very much. I am going to have to call my doctor again on Monday to try to get some help if it doesn't resolve. I will for sure not go back to the ER unless I believe I'm dying again. I really did think I was, and it is going to take a while to heal from that level of horror.

I'll go back to therapy when I can. COVID is still too present, but I'm hoping to have access to a vaccine soon.

I wish I had access to a Nephrologist, but all of mine are gone. Even if I did have the funds to go back to Jackson, they aren't there any longer. I regret the money I spent to travel there over the last several years, because nothing was accomplished from 2016 on. Nothing was done at Neurology clinic, either. It seems that when my original doctors left, I should have, too. I do appreciate Dr. C for wanting to help me. There was just no follow through on any ideas before the hospital's financial aid cut me off, and he moved on to another facility. It grieves me still, and probably always will.

So I don't know what to do anymore. My Internist, Dr. B, is overwhelmed. I love him, but his office never fails to be a frustrating disaster. Every time I have to ask for something to be fixed, I feel like I'm being labeled a problem patient. I need to be connected to a facility that can manage my conditions correctly and in a timely manner. I shouldn't have to melt down every 2-3 months to get my kidney and muscular dystrophy medications. It's inhumane to neglect me until I can barely function, then gaslight me as a troublemaker when I'm upset about it. I'm trying to f*&^%$#@ survive. Sue me.

I exist on the couch until further notice. Just like my mother did when she was dying a horrible death.

I Will Die On This Hill

I was at the grocery store earlier, waiting on my laundry to dry next door. A black man and I stood at the TV watching some of today’s outrageous events unfold in D.C. He turned to walked away and simply said, “Sad.”

Yes it is. Among other things, it is deeply sad that our country has been reduced to this, all for a deranged white nationalist sociopath who launched and continuously fueled a massive moral and intellectual regression. The blame for all of this chaos belongs entirely to the Trumps. It is who they are. Violation is their legacy.

He didn’t make America great. He made it a disgrace. And every person who resides in this country will be forced to live with the side effects of that fact, coming from both inside and outside of our borders, for a very long time.

I am a minority opposing the Trump administration in my state, and let me be very clear, I stand proudly and without hesitation in that decision. I don’t know what’s going to happen next, and I may not be worth much in the world’s shallow eyes, but my integrity is sound. I will die on this hill knowing that I was on the correct side of history.

An Unexpected Phone Call

I received a call on New Year's from the blood bank, asking me to donate to a pediatric patient who matched my rare blood group. I said yes, of course, but wanted details about my blood so I could document it. They pulled me up in their database, and wrote down what matched me with the patient. It turns out, in addition to being A negative, I am in an ultra rare Rh blood group that includes several missing antibodies. The lack of these antibodies makes my blood safe for newborns and infants. These antibodies are found in over 85% of adults. I’m in the vast minority who doesn’t have them. The staffer told me that, as well as my A negative type, put me in 6-11% of the population. Babies needing a transfusion can only be given blood that is the right type + lacking antibodies they don’t have, because giving them antibodies they don’t have can shut down their organs, which are still in development. If you’ve heard of the Rh shot given to some people during pregnancy to save their baby, this is the same. Incompatible Rh is potentially deadly, thus the critical nature of finding exactly the right blood. The percentage of donors who are eligible is so tiny, they have asked me if I would remain on-call to continue to donate to this patient for as long as it’s needed.

If you are eligible to donate blood, please know it is safe to do so. Everyone is masked, everyone’s temperature is taken, and sanitizing is strict. It doesn’t hurt anymore than a blood draw at the doc office, and it only takes an average of 15 minutes. There is a critical need for all types thanks especially to COVID. Your blood may be tested for COVID antibodies. Mine have been negative, but we will see what my results are in a few days.

I feel fine after donating this time, as I followed their instructions and ate a full meal before donating. They give you snacks and drinks if you want them, and I will also eat a nice balanced meal tonight.

You never know who you will save with your donation. I was not expecting to do this again, but that phone call has given me a sense of purpose; a specific thing that I can do to help a specific someone that I’ll never know. For a humanitarian, it doesn’t get much better. I’m grateful to help.

We are finally at the end of this unbelievable year.

My yearly goals in review is upon me.

I'm not ready. Was ANYBODY ready for this year?

Absolutely not.

A worldwide pandemic. Who would have ever guessed?

At least we have a vaccine now, and although it's going to be a long road ahead, it is a glimmer of hope.

We have to hold tight to that four letter word. Hope is everything.

I'm not looking forward to recalling my goals, but here we go:

1. Weight has not changed.

2. I did read a few more books, but not as many as planned.

3. I had to cut therapy because COVID put the brakes on in-person counseling. I did, however, connect with some people online, and I have learned a lot. I hope to continue to, and I do plan to return to the counseling center in 2021 (I suppose I'll do this after vaccination).

4. Memrise is a great app. Try it! I am not bilingual, and I don't know if I will ever be, but I know dozens more words than I used to, mostly in Spanish. I'll pursue it further at a later date.

5. I took long breaks, but I did some work on this blog that you may not notice. And I made a new header, which I figure you do notice. I'm simplifying as much as I can, and I think it's going pretty well. I do intend to blog in 2021.

6. God knows I tried. If you are a regular reader, you know I changed my mind multiple times about dating, and eventually decided it's a "no." And it definitely is. I don't have the health for that nonsense. Maybe someday I will. I care about my friends, and I hope we can try to build our relationships again after the pandemic is no longer a concern.

7. Yeah, this needs work.

So that's that.

Should I even make a list for 2021?

1. Survive.

That's it. That's the list.

Unconventional for me, perhaps, but I believe it's appropriate for what has been an incredibly bizarre chapter in my otherwise bland existence. At the present time, surviving is enough.

I want you to survive too. Thanks for reading my blog, and I'll see you in 2021. x

On the waves of sadness and loss.

I learned of Kay's death on Christmas at midnight.

My friend Robin's mom Tressie died today. Her daughter died in October. Sweetest people you'll ever meet. It has been a day of many tears.

I'm also remembering several friends this week who died years ago, including Deanna, Vicki, Sasha (Alexander) and Brandi. And of course Zollie, and my art student Mark who all died in the month of December. And I miss my grandparents.

Malisa is still in ICU. I hope for a miracle so she can go home to her family. She has an 11 year old daughter.

There is a lot of suffering and frustration with this pandemic. I worry about friends, family, and doctors. I don't think the COVID vaccine will be very safe for me (flu vaccine wrecks me badly), but I know I'm going to have to take it anyway, and just hope for the best. What's the alternative? There isn't one, especially living in a place that is being so profoundly stupid about this. I can't trust anyone. I had two scares, as I was exposed to COVID twice - the first time by a friend, the other by a relative - both times in an enclosed space. Miraculously, I didn't get it. I tested negative both times, and have no antibodies. I tested a third time before Thanksgiving, voluntarily at a free drive-thru, and received no results because Mobile County Health Department is careless. Not sure what the point was in opening "before you decide to travel" testing locations before the holidays if we weren't going to know one way or the other. At any rate, I didn't travel, and I know I was negative despite feeling like utter crap all the time.

We lost actress Dawn Wells today. She "socially distanced" on Christmas, and died of COVID anyway, six days later. There's not a lot of hope in that. It's pretty scary to think about.

I'm trying to get used to the fact that I need to stay home and stay away from everyone until further notice. I'm an introvert, but being completely shut off from the whole of society is not the same thing. The introvert jokes make me laugh and wince at the same time. I was fine for the first few months. Then things got worse, and there was good reason to be upset, frustrated, scared, and just plain tired of it all. But I'm preparing to do the right thing and continue to isolate in 2021. I stocked up on non-perishables. I resubscribed to a meal kit service, which starts January 6th, so ingredients will be delivered to my doorstep on a weekly basis. I'll drink a lot of soup, make artisan bread, and occasionally hit a drive-thru. No sit-down restaurants, no parks, and limited grocery store runs for perishables like dairy. My little brother gave me a gaming subscription to help me pass the time, and I have my other games, and I have art supplies and books to read and adult learning apps. I have a novel to finish! I still have social media to rant and rave and keep in touch with people who want to keep in touch with me. I remind myself that I'm safe where I am, and that I am fine as long as I have access to my meds and don't get any sicker.

I am deeply sad for the losses we've suffered, and as always, grief comes in waves. The best we can do is let it wash over us without getting pulled under. So let's all hang on for our lives; together, but apart.

A Hard Christmas

 

I overdid it on the bread-baking a little bit.

It was enjoyed, though.

MawMaw's couch, which I spend a great deal of time on, has a new cover.

This white chocolate sunflower walnut bark was awesome.

I tried my best to be in the Christmas spirit.

In reality, I was broken. I had learned of someone's death from COVID at midnight, and didn't sleep. I was in severe pain, risking my health, and feeling very much like I should have stayed in bed. I didn't last long. I ate a plate of food, gave my gifts, and went home. I cried most of the time I was awake.

The days leading up to Christmas were more pleasant. I was still in severe pain, because I always am. That never changes. But, I was able to participate in several online santa exchanges, sending gifts to a few people, and receiving a few gifts in return. I'm not going to bother with pictures. I'm tired. I also made a lot of candy and desserts, and passed them around to family and friends, as usual.

Kayla sent a grocery gift card. John sent an online Nintendo game subscription. I have snacks, and I may never leave my home again now that I'll have unlimited access to Super Mario Bros.

I also received an unexpected $100 from a page on Twitter that trolls the psychotic new site Parler. I laugh at some of the stuff they post, although most of it is very troubling, as it is extremist nationalism. I do not have an account there, mind you, I am only following the Tweeter that makes fun of Parler. At any rate, that person, who asks to remain anonymous, sent me and a dozen others $100, which was very kind, and incredibly needed since I had $15.00 in the bank at that moment. I also received some $$$ from a dear friend after Christmas, which has also been a tremendous help. I appreciate that at times when I am struggling, people appear in my life who lift me up, whether financially or otherwise. I don't take that for granted, and I do everything I can to pay it forward as often as I am able to.

This hasn't been the worst Christmas by any stretch. I've been through way worse, including bedbound illness, homelessness, and more. I don't want to think about it or talk about it, but I recall enough to maintain the perspective that I am currently safe and surviving, albeit, in poor physical condition.

I am grateful, and I will keep trying.

Art, Decor and more

I created a new header for the blog. It's simple, but gets the point across just fine, I think. I appreciate those who have helped me test out the blog at various times, and for being here reading my mess after all of these years. 

I don't usually decorate much for Christmas, but a young man on Askfm talked me into it. :-) Speaking of Ask, I'm at nearly 9000 answers if you haven't been there lately. It's a wild place. I try not to take it too seriously, but it passes the time while I'm down with my conditions and unable to sleep.

Acrylic pouring has become a hobby. I can't do it very often, because it is taxing on my body, but when I can, I try to make the best of it. Here are three sketch journals for my friend Tony's kids.

My beloved Monopoly scrub shirt from 2007 is too small, so I turned it into an apron, sort of. I should learn how to sew, but I don't really feel like I have the motor skills, and I never have.

My kitchen is as adorable as an old government apartment kitchen can be. I'm trying, folks. Can you believe I still (!!!) don't have a refrigerator? I understand that COVID and hurricanes have resulted in backorder, but it's pretty frustrating. Oh well, I've been through worse. Keep on and carry on.

Friend Material

Dating and relationships. Blahhhhh. It's not for me, folks. At least, not at this time. I closed the relationship profile, and don't really want to talk about it. No matter how much therapy I put myself through or how many articles I read or how much I don't want to always be alone, I know in my heart I will always be better friend material than intimate partner by a thousand miles. My health is poor, and as I have always said on this blog, I am not comfortable dragging someone into my personal hell. I fight multiple life-threatening conditions daily and never get a break from it. I am tired tired tired. Everything hurts. There is too much ableism in the world, and it will never be overcome in my lifetime. My sense of not belonging here is deep and unmovable, so my priority must remain striving to stay alive and true to myself. That's the bottom line.

I have lovely people in my life who I am grateful to call friends.

My heart belongs to charity, and I am always trying to do something to make living seem worth it. There is so much pain, both literally and figuratively, and I am constantly looking for a way to ease it for others, and as a result, myself.

There isn't a thing I can do about my physical pain. I'm stuck with it. There is no hope there. So if I can do something to ease any other kind of pain in the world, the resolvable kind, I suppose, that is what I will do.

What I need is personal, self-fulfilling purpose. I was so ruined by religion, that it was drilled into my head that my purpose revolved around a man; his lead and his will, that somehow was supposed to benefit me because I was serving him? Gross. And sadly, that narrative still tries to barge in even though I know better now. 

I absolutely refuse. It is not who I am. It is not who I want to be ever again.

I'm not opposed to having a companion someday, when I am feeling better and doing well enough to never, ever need him to do a damn thing for me. If I am with someone, it is because I want to be there and always have the means to walk away if I feel unsafe, disrespected, or unhappy. That's not where I am in life, and it didn't take long for me to realize it after presenting the notion. It felt wrong.

That's it. That's the blog.

If you are my friend, I thank you.

Shocked

My next door neighbor came home from work, told his wife he liked his job, and dropped dead. I can’t believe it.

I’m at a loss for words.

Alex Trebek

I get that he lived a long, good life,

but this hurt, and Cancer sucks.

Historic Win

 

My relief is beyond words.

Meeting J.J.

As I mentioned earlier this year, my newest nephew was born quite early. Thankfully, he is doing fine and thriving with his sisters in their new home in West Virginia. I am grateful that I was able to meet him before the big move.

I'm a proud Aunt.

What a sweet little dude.

He found the baby on camera. Ha! :-)

I sure love him. I'm relieved that all is well. It's going to be a long time before I can visit - I suspect a year or two. I don't have the health to travel at this time, anyway. I've never been on a plane, but will consider it. Once COVID is completely under control, it will be discussed.

The first of several catch-up posts (with pics)

After over a year hiatus, I joined NaNoWriMo for 2020! I still don't like what they did to the website, and others don't either. It appears that many register there, then move on to Discord for groups. I am not on Discord, but found a nice group on Facebook for sprinting. And yes, I am a rebel as usual. I will be revising my children's novel. I've thought about those kids a lot, so it's time to continue their story. It's one of the major things I want to complete before I keel over. The way things have been going health-wise, I feel like I better work on it.

I finally caught 23 and Me at 50% off, and jumped on the opportunity. I am interested in knowing what they think about my health risks and food sensitivities, considering how wrecked I am, so I am waiting for the kit to arrive. I will keep you posted, of course, on the results.

upi dot com

The North Central Gulf Coast has been wrecked by hurricanes this year. I was affected by two of them: Sally and Zeta. Both did a fair amount of damage, although my apartment is fine with the exception of losing the fridge and freezer. I'm living out of an ice chest until management addresses it, which will hopefully (!) happen in the coming week.

Drying parts of the floor

The fridge compressor died, resulting in an impressive leak. I'm thankful I didn't experience actually flooding. It was a mistake to restock the fridge and freezer after Sally. Everything (except the bread below) had to be thrown out. I have lost an awful lot of food this storm season.

Bread dough is the only thing I saved from the freezer.

It's not exactly pretty, but it is yummy, so I'm documenting it.

I put a short video of my flooded area on Facebook (friends only). I've chosen not to sightsee or post damage images anymore. Some folks down here are going to need help, as they also did after Hurricane Sally. As always, the best ways to do that is through disaster and food relief orgs like Salvation Army, Red Cross, Direct Relief, and Feeding America. For my immediate area, Feeding America is probably the best option, but that is a matter of opinion. Of course, there is a lot of work to do and help needed all over the central coast. This hurricane season has been record-breaking, and an exhausting mess.

For those who have asked how to help me, my Venmo is "ugottafriend" and my PayPal is KBosarge. Thank you, but please never make any financial sacrifices for my benefit. A couple of friends have helped already, and I am surviving.

Halloween was a bust, but I went next door for this cute donut.

I will end this post here.

I'll continue catching up in a day or two.

Thanks for still being here.

Abandonment Sucks.

I've been through it more than once. And although I realize a blog is inanimate, I'm sorry I did it anyway. My reasons range from exhaustion to hurricanes to chronic illness to simply not knowing what to say anymore. I do have plenty to catch up on here, if I am to continue to talk about my life in such detail, but I wasn't sure for a while if I wanted to do that. I asked my friends on social media what they preferred to read on a blog, and they reminded me that I write as an outlet for my own benefit, and that I should keep doing so. In other words, write whatever I want, whenever I want. It's me, myself, and I up in here, just like my daily life at home. This happens to be my online home.

So I guess I'll blog on. It has been 12 years now since I started this one. I used to be on other sites, which are now either dead (shoutout to Yahoo Geocities and that sketchy site Diaryland!) or seemingly trudging through cement (LiveJournal anyone?) and I shut it all down. Blogger has been a solid choice in spite of having to kill the comment section due to spam and trolls. I don't like the new interface they've set up behind the scenes, and they are dangerously close to getting their butts cancelled, however, I will stay until I decide to finally drag myself kicking and screaming to WordPress. I think I'll take a free tutorial and give it a test drive sometime soon. At any rate, ugottafriend dot com is still the place to find me if you're not on Instagram, FakeBook, or the Tweeter hellsite.

(I insist I'm not fake on Facebook, but like most folks, I take issue with some of the happenings there.)

So, here I am, like something my non-existent cat dragged in, saying hi.

Hi. :-)

Hope for Malisa

I will be back very soon with multiple backdated updates. Until then, please think of my sweet friend and blog reader Malisa who is in critical care. These conditions we battle are so cruel and unfair. My tears and prayers are with her, her partner David, and their 11 year old daughter at this time.

 

Tribute to Justice Ruth Bader Ginsburg

I have wanted to say something, but it wouldn't be adequate.

This is a very nice tribute to RBG, followed by additional videos of interviews if you choose to view them.

Rest in peace, and thank you for being a "notorious" heroine to so many.

Hurricane Sally and Me

 

I know this is a lousy update, but I’m just going to leave it here for now. I am exhausted. Talk to you soon.

15 Years Since Katrina, and Laura Relief Info

Every time I leave my apartment, I see evidence of Hurricane Katrina right in front of my face in the form of a rusted metal sign that used to say Sonic Drive-In. Now, it simply says the word “Closed”, and has remained that way for 15 years.

Mom experienced Camille in ‘69 and talked about it the rest of her life. Ask anyone who loses everything overnight, and they will tell you that feeling stays. Despite moving on, Katrina has never truly left me.

And at this moment, there are people in Texas and Louisiana who are wearing that unwanted badge. Let’s help them if we can.

Heaven knows they came to our aid even when others failed to.

I won’t forget. I couldn’t if I tried.

Worldwide disaster relief, including Hurricane Laura:

https://www.directrelief.org/

Free meals in affected areas:

https://wck.org/

https://operationbbqrelief.org/

News reports with many ways to help:

https://www.nytimes.com/2020/08/27/us/hurricane-laura-how-to-help.html

https://www.wlox.com/2020/08/27/list-louisiana-relief-donation-locations/

Thanks for reading.

T-Shirts to End Systemic Racism

END SYSTEMIC RACISM: https://www.ebay.com/sch/ugottafriend/m.html

I am selling shirts, fulfilled by Printful, Inc., with all profits going to Color of Change.

I've already sold a few. Here's a screenshot of the latest donation.

Thanks for considering.

I will post Hurricane Laura relief updates next.