Today... Because every day is something new...

People often ask me how I am feeling and I tell them the same thing...it depends on the day.  

 

Today was a bad day, a day where I could barely function, but managed to work almost nine hours and accomplish a lot. My stomach, which has been good the last year amazingly enough, has been bad the last two weeks. Not the bad, so far, that put me in the hospital twice a few years ago. But, bad enough that I have been up every morning around 2am with multiple trips to the bathroom until 5:30 when it is time to get up….and it has been ugly. My abdomen has been horribly swollen and every time I eat it gets worse.  Now, of course, I have gotten another UTI, which is not a surprise, but not good. I get UTI’s every week now thanks to the lovely pre-menopause issues raking my already fragile body over the coals. Oh yeah, can’t forget the Adrenal Insufficiency mixed in to make things horrible. The pain in my pelvis area is so intense today I can barely walk. And it is on both sides which worries me more than normal.

Today my temperature hasn’t dropped low as it can these days, but instead is a little above normal. This means that I do have a fever far above that. But, if I went to the ER they would take my temperature and look at me like I am crazy, as so often happens, because so many in the medical world don’t seem to understand what Adrenal Insufficiency does. As usual, I have to teach those who are supposed to be helping me. As a friend of mine once said, “That’s why they call it a medical “practice.”  Today my eyes are also incredibly painful and bloody red, another side effect of the Adrenal Insufficiency I think. But then again, I can’t get any doctor to answer this for me. I am pretty sure though because it seems to happen when I am not feeling well these days. That and having constant blood vessels pop in my eyes due to the steroid.  My face is somewhat numb, my fingers are tingling on and off, and I really just feel like shit.

As usual, when things are going haywire with my body, I have to analyze why and what I should, or can, do about it.  I have gone through the list of things that could possibly have set off my stomach issues. I figure out a few things that it may be, but it could be others as well. Just to be safe I stop eating a few food items that I calculated I ate within the last two weeks, I have bought bottled water instead of using my filter just I case as there is an ongoing septic issue at the place I currently live in. I have wondered if it is the steroid I use catching up with me, or the new powder antibiotic I have used the last year. And I have worried a lot if I will have to give the antibiotic up because it is all I have left to help me. I am resistant to most other antibiotics these days.  And I  worry about it if is something worse like cancer…. Playing doctor is part of my life since doctors have become so useless, so finding my way through this process is just part of my normal routine.

I have thought about what will happen if I have to go to the hospital. It’s Thursday right now, so if I can get through tomorrow at work then I can go this weekend and not lose any time at work. This has always been important to me and so many times over my life I have worked when most people would not be able to get out of bed…because I have to, and because I need to. I plan out if I will be able to ask someone to take care of my dog and my cat. I worry about how my dog will be if this happens. I worry about how my cat will be if this happens.

I called my gastro doctor today to see if he can see me before my already scheduled appointment in two weeks, but he is booked up for another month. So, as usual, I will see how it goes and most likely end up in the ER because there is no place else to go. It takes a lot for me to go there…

Well, turns out the doctor thinks it may have been some sort of infection, but he was not positive. But, of course, once that cleared up somewhat I started having crazy pains in my chest but I knew they were not heart related since I know what that feels like. Turns out I somehow now have a hiatal hernia. Go figure how that happened.

 

 

 

 

 

 

 

 

 

 

 

Eighteen Years!

Today it has been eighteen years since my transplant. I have repeated this to myself a few times since I woke up this morning and it seems difficult to comprehend all that has happened along the way. To this day flashes of memories still pass through my mind’s eye at random times, but they always seem to happen more when this anniversary gets closer. And that of Dave’s birthday. Either he is out there making that happen, or our minds really are more powerful than we really understand. I cannot say I deserve to be here, and still question why I am when others are not any longer. I can say that I go to bed almost every night saying thank you for the good and thank you for the bad…and mean it. I can say that I am definitely not the same person I was then, maybe not better nor worse, but definitely different. I am tired both physically and mentally, yet feel more at peace than I ever have. Perhaps it is a natural progression with age, or perhaps all that I have been through. Either way, I am eternally grateful for the chance to be able to see, feel, do and be every second of these eighteen years. And if I am lucky enough, I will have the chance to continue to find my way for a few more. Thank you Dave.

Desperate Times...

Over the years I have ventured out of the vicious cycle of Western medicine in desperate attempts to get help. It used to be just for help with my urinary tract infections so it seemed like a possibility to explore.

 The first attempt was a visit to a Chinese Herbalist who gave me a mystery tea to drink. My stomach, which had been cranky since shortly after the transplant, was very unhappy with that experiment. Then a visit to a Naturopath where I spent hours filling out a questionnaire and another few reviewing the answers with someone, only to be sent home with a tiny vile of small white beads which turned out to be baby placenta. I obviously did not consume them, never mind even open the vile. I did however put it on the table and marvel at the craziness of it for a few days before it went unceremoniously in the trash.

With those two paths not a viable option for salvation, acupuncture has crossed my mind on and off the last few years. You would think with the thousands of needles my body has endured a few tiny ones would be nothing that would scare me. But, alas it did. Funny how things change when issues get more serious and antibiotics are out of reach. Suddenly being scared of tiny needles seems horribly trivial. So, that's how I  found myself today lying on a fabric covered table in a small room with eight tiny needles sticking out of my feet and legs and a big bell propped on my stomach to ring in case I freaked out.

 It was a very long 15 minutes, but I think I will try it again. After all, desperate times make for desperate measures.

 

 

 

No choice in some choices...

Do I go or do I not? That question used to be easier to answer, but now the answer is no unless I am really, really, really sick.  And then the chances of being yelled at and being sent to the "big" hospital are what I can expect. 

Today is day number four of feeling pretty horrible on top of a week of feeling somewhat badly. I have done all of my usual self diagnosis and trying to work through the situation. This time it appears I have a bad UTI, the first bad one not controlled by my Monural in a very long time. Then again, I took a chance and travelled long distance a few weeks ago and had to take an extra dose while away, so it may have been brewing. I am just thankful that it did not get this bad while I was gone.

As part of the process I have to think about all of the things that can happen. If I go to the ER they may send me off and that means I  will miss work and have no one to care for the animals. Next week is an important week at work and since I took a few days off recently to travel I cannot take any more off or it will look bad, especially if it is because I am sick. I don't want to leave the dog alone again and don't want to ask my neighbor to help again. 

If I go to the ER and they keep me there that would be okay, but then again I am resistent or allergic to antibiotics now so the chance that they will is slim to none. And depending on the mood of the ER doctor who is assigned to my room, who knows what can and will happen. Either way it hasn't been good the last few times. Today is Sunday so if I go to the ER today it and they actually do just give me an IV and send me home then it won't impact work, but that's a slim chance.

So, I took an extra dose of my Pred, drank some Pedialyte on top off the water I am guzzling as usual, and have a warm compress on my body. 

Will see how the day goes and see what happens.

There is no choice in some choices...

 

 

 

 

 

This is what it has come to...

My life revolves around my health and definitely my health insurance. And I admit that the health exchange has been somewhat problematic over the last few years, and every year has been weeks of stupidity to ensure that everthing is taken care of.

But, this year has raised the stupidity bar to a whole new level. Today was the sixth day of calls trying desperately to figure things out. I have been transfered at least five times, told to call the "other" organization several times, hung up on by mistake, put on hold multiple times, and told different things depending on who I was speaking with. 

It appears that the insurance that I have been on for the last few years is not being offered in 2018 in my area. Oh, wait a minute, it is, but just not the plan I am on. And the letter that I was sent stating in writing that I was automatically transfered to another plan within that insurance? Well, no one could find that anywhere in their system, never mind the letter they sent. No, wait a minute, one person did see it, but still said that the plan is not showing up. No, wait, it is, but without a subsidy even though it is clearly written on the letter. "Please call the other organization because we are not sure and only see two plans for you, and that is not on the list." "No, you are definitely qualified for that plan, we are not sure what they are speaking of."

This went on for days...back and forth, back and forth.

Okay, then, since no one can get their shit together and my life literally depends on having insurance, what are the choices that you say I DO have? Well, the next explanation was that I can get a different plan through the insurance I currently have but it will cost me over $750 a month. Or, there is another one that I qualify for, but my most important transplant doctors at a major hospital do not take it.

I asked for the hundreth time why I was sent a letter that I am ALREADY automatically enrolled in a plan which is neither of those. Once again, no one could explain. No one could or would try to figure it out because in their system it was not there.

 So, what do you do when time is limited and you must make a decision based on two really crappy options. Well, there really is no option if you think about it. There is no way I can afford over $700 a month for a premium and that's that. 

The good news, if you can call it that, is that after more calls and research I found out that there is a payment plan and if I call the hospital financial department weeks before an appointment with the code and date they will give me a 25% discount. This is better than nothing. But, what happens when, not if, when I am sent to this hospital because no one at the hospital in my area wants to take care of me because I am "too complicated?" The 25% won't do much when the bills are thousands of dollars.

This is what it has come to. Being forced to choose from the lesser of evils and having another thing to worry about. This means I will be unable to do any of the things I was hoping to do next year  because the money which is already so tight will have to be there for those payments.

Because it's not if, it's when. 

 

 

 

The way the blood flows...

My breasts may be small, but they are dense and full of lumps. Crazy, hey. Because of this I have had to get MRI's as well as mammograms over the years. 

Thanks to the worry of cancer, I have also had several biopsies over the years, all so far being non-cancerous. Today I received a call post MRI from a very nice woman who spent five minutes telling me that they saw many cysts and all looked good,  but....there was one small 4mm spot which was worrisome because of the way the blood flowed. Something I heard when I was diagnosed with cancer in my transplanted kidney.

She told me that it is probably nothing, several times, but I need to have an ultrastound and possible biopsy. 

So, it is scheduled for two weeks and, as usual, I will not allow myself to think too much about it until it is time as worrying does not solve anything...right!

 

No one will help

Today sucked, in fact this whole week has sucked. My body is in a war with itself and I am the prisoner. It used to be that my UTI's were simple and I knew my body well. The Adrenal Insufficiency has changed that and now I really have no idea what the hell is going on.  

My temp has been so low that it feels like I am dying. At the very same time I am sweating from every pore and can feel all of the symptoms of a fever that will not show itself.  My eyes are so painful that it is making me sick to my stomach. 

The fact that I am feeling this way and have worked all week in this condition is a testiment to what I do to make things work. It feels like a delirium and I am really not sure if I am all here, even as I write this. It is that stupid temperature drop. It is actually worse than having a real fever I swear.

So, my body is dealing with, fighting with, something. It is a UTI that is not showing in the usual way? I took a dose of my emergency (And last chance) meds last night but did not help. It is the bad sinus infection I have been dealing with? The meds they gave me did not help and I am not willing to risk what little meds I have left in the world as a choice. Is it the menopause issue that was set off  because my body thought it was a time of the month to do something...or, is it all of the above or something else? I would go to the doctors, or even the ER, but I know from experience that there is nothing they will do. They will see my temp "looks okay" and if my bloodwork looks okay...they will just send me home with no answers or help. No one understands what Adrenal Insufficiency is, or does to your body. No one will help me. I need help.  

I could take a real high dose of Pred, but that will ultimatetly set off something horrible with my eyes and not sure I can deal with that again.

So, I will just crawl in bed early again and hope tomorrow brings better things...

 

 

 

French Toast, Anyone!?

So, I may never eat french toast again...but, maybe, who knows.

I would have written this at the time it happened, but unfortunately I was projectile vomitting, had serious diarrhea and a fever of almost 103. All thanks to a brunch of french toast at a so-called respectable restaurant. And, three other people got food poisoning as well from the french toast, but of course, I am the only one who ended up in the hospital.

After spending the whole night screaming in pain and basically making my bathroom an incredible mess, I was so exhausted and sick I could not get out of bed. I was afraid to call the ambulance knowing they would automatically take me to the "big city" hospital rather than the one here, just because I am a transplant patient, so I finally got a ride to the nearest hospital by a knight in shining armor who just happened to be suffering from the same food poisoning. Asking for help in this manner was a big step for me, but the fear of being shipped off with no questions asked is bad enough to make me lower my independence streak once in a while, ha!

Luckily for me I got an ER doctor who had a rational side and ended up admitting me at his hospital. It was close though as he pondered the situation for a while and made me nervous. Nothing like having to stress about stupid things when you are so sick!!

After 24 hours being filled full of antibiotics and IV steroids I was feeling better and sent home. Not until the hospital doctor came in to meet with me and decide whether to discharge me or not as they were freaked out that I had a UTI when I came in which made me laugh...not in a good way. As I explained, I hadn't been able to drink for more than 10 hours, I had serious diarrhea and vomitting and was incredibly dehydrated, so what did they expect!? That concept seemed to be confusing for them...

 Being a transplant patient in this town really scares the medical world and that is a shame. But, this time it worked out and I was able to be treated like a "normal" person. I am thankful for that.

Still not eating french toast....I don't think...

 

May 9, 2018

Today's, amazing enough, is the ninteeen year anniversary of my kidney transplant. It's difficult to express properly what these years have been like. Impossible to convey what has happened, who I have had a chance to become, the things I have been able to do...only because I was given a chance to live by someone else's decision.

Dave died in 2010, and we were together 17 years before then. So, his kidney which resides inside me means even more as I am solely responsible for keeping him alive...as he is keeping me alive...

I am grateful for the good, the bad and everything in between. I am honestly peaceful and do my best to make sure that my gift, all the gifts along the way of my life, are appreciated and that I do my best to be the best person I can be. It's all we can do, and everything we should do!

 

Knowing Dave is Free in Spirit makes me smile...