Background Part 7: Life Goes On…

Funny thing about life is that regardless of what you go through on a daily basis, i.e. work, school, kids, disease, you know the usual stuff… life happens.  Plain and simple, It keeps going. Things never seem to stop to give you a break and a change to take a deep breath, to take in everything that has just happened.  I fully intend to keep the wrap up of the background series medically focused, however it needs to be known that in the midst of all the madness, real life every day ups and downs are always ongoing too.

2009 was a big life changing year for me.  In the beginning of the year I was separated and then divorced.  I was on my own with an almost 3 year old daughter.  I won’t get into the details but as in any divorce there were good reasons, and looking back it was the right decision. That marriage would never have lasted… better earlier rather than later!  It was extremely difficult, but of course what divorce isn’t?  Being on my own, having to provide, being a single mom, and not knowing when my next hospital visit would be was stressful to say the least.  I knew then I would not be able to stay in the mediocre role I was in, I would need to do my best to work up the ladder, and it was at that moment I set specific goals for myself in what job and salary I wanted to make by the age of 30, and sure enough 4 days after my 30th I was there.  Thanks to an old colleague of mine who always told me to “Know your worth!”(you know who you are).   Stepping back, that divorce opened my eyes to a whole new view on the world.  A new stance on the people I surrounded myself with.  People definitely act differently towards you when you go from being married to single.  There’s a certain judge-mental aura you get from those around you that have an issue with it and it is so insanely obvious.  Between the chronic illness and life’s drama, friends were dropping quickly.  It was also a time when my parents were living in another country, I felt very alone.

Then one day, I just stopped giving a shit!  I sat down and wrote out what I actually care about in a person, what traits I would admire in a man, goals I wanted to achieve and how I wanted to reach them, and most importantly not to care about others opinions.  I don’t know why I ever cared to begin with.  Maybe it’s a female thing, or maybe it’s a maturity thing, but I grew out of that phase almost over night.  The people that truly cared for me and valued my friendship stuck around, treated me as family, treated my as an equal, never judged, never thought anyone was better than anyone else, never devalued anyones opinions, and most of all truly loved me for who I was, regardless of illness or anything else.  These people have stuck by my side since.  Both close family members and friends.  They have sat with me during hospital stays, kept me company, brought me food, movies, or just came to cheer me up in general.  People frequently ask me how do you do it?  How do you make it through all of this and still keep going with a smile none the less?!  It’s the people.  They keep you going, they motivate you to keep fighting, because turns out, they want you to stick around!  Without them I honestly don’t know how I could ever possibly make it through even half of what I have gone through!  Friends and Family, gotta love em!

Before I knew it I was dating.  Funny how life works.  You get your priorities and shit together, without any intention of wanting to dive into a relationship, and life brings me my soul mate.  I even told my    now husband at that time I planned to never be married again, which 6 months later turned into “well we need to be dating for at least 3 years”, no rushing (He proposed just before the 3 year date)!  Back to the start…1 month into our relationship I had an appointment with my OBGYN.  Things were getting worse with my Endometriosis.  On top of not being able to keep in under control I was forming adhesions.  I would need another surgery for it, but there was a catch.  She would not be able to do any more surgeries for it because of the adhesions, they had taken over my pelvic cavity and any more surgeries would make it impossible to do anything else laproscopically.  This would be my 6th laproscopy for this specific issue.  My husband learned very quickly that a relationship with me meant never a dull moment, and never an easy one either.  He saw me through the procedure, took me home, helped take care of me and everything.  He has never, once, not been by my side while I have had to be in the hospital or ER.  He never complains about all that he has to do for me, about dealing with the emotional roller coaster I can be when going through everything.  He is patient, caring, and quickly learned to stay on top of the doctors so they don’t push us around.  I am extremely lucky and thankful for him.

That year I would have 3 surgeries, and the year after 3 more and the year after 3 more and so on.  Stones, stones and more stones would pass.  I would need cystoscopies, stents placed, fluids pushed, IV antibiotics, things lasered out and sewn up.  I was used to the routine.  My kidney specialist has me on VIP status at this point for the ER so that when I do need to go in, I don’t wait.  He also provided me with his cell phone number when I need to go to the ER so he is aware, incase he is not on call.  There is a story here, but we will get to that in a later blog where I will do some major doctor bashing.

2010 Would prove to be a devastating year.  My endometriosis had spread very quickly after the surgery the year before, only this time it was attacking my left ovary.  The doctor could see there was an issue with the ovary and knew.  She came in and explained to me that I would need to plan to have a hysterectomy within a few weeks in order to save the right ovary.  Being only 26 I needed to keep my ovaries at least until 40 as it can be dangerous to have to take hormones for such a long period of time to prevent early menopause.  I was an emotional wreck.  I have always known I wanted kids and I wanted a lot of them.  My favorite thing in the world is being a mom and I cherish every single moment I have with my daughter.  The thought of never having the possibility to do it all again was unbearable.  Deep down I knew it would be doubtful for me to ever have another child, but having the possibility gave me some piece of mind.  This would seal the deal, this would be it.  I told myself over and over just how lucky I was to even have had the chance to be pregnant the first time… it really didn’t make me feel better.  To this day, I still tell myself that and maybe it sounds selfish, but I still want more, and it still doesn’t help.  It has gotten more and more difficult lately with everyone I know having babies left and right.  I feel like there’s not a day that goes by where I don’t see 10 pregnant people I know, and 10 more with their new borns..but I digress.  The surgery had to happen, I didn’t have a choice.  I had to have a hysterectomy.  So I tried to focus on the positive.  NO MORE PERIODS!!  HELL YES!  hahaha  This was at least a HUGE plus!

Another year had passed and here I was in for a check up.  I had gone in to talk to my doctor about what I need to do to freeze some eggs.  At this point I figured the sooner I take care of this the better!  I may not be able to carry, but I could at least give myself the chance of having more babies with my eggs!  She sent me to a fertility specialist and they walked me through the process.  It was not what I expected.  I would need to be on progesterone injections, so pretty much the one thing I could not tolerate, for 6 months!  Fuck.  This is what I was on to get pregnant with my first child and it made me have cysts rupture about once a week.  I would need to think about this.  Could I put my body through that again?  How would I manage? Hormones also seem to effect my kidney disease and make me create more stones.  6 Months.  Another devastating blow to the possibility of me having children was hearing what I would need to endure.  I just didn’t think my body could deal.  Turns out my body decided to take this issue and solve it for me.

It was a Saturday morning.  My husband and I were up getting ready for the day.  I felt a twinge of pain in my right side that made me gasp.  I immediately sat down and waited for a moment, again like a knife inside me, a sharp sudden throbbing pain hit me.  I knew immediately it was a cyst.  I waited it out, as usually my cysts were small and didn’t require me to do much, but within a matter of 30 minutes I was feeling really sick.  My husband could tell something was really wrong and we rushed to the hospital ER where my OBGYN was located.  They needed to do a scan right away as they suspected it could be my appendix.  The ER doctor on call turned out to be my OBGYNs husband so he would keep her apprised of the situation if anything was ovary related.  I was called back for a CT scan.  “Ma’am, is there ANY possibility you can be pregnant?”  The dreaded question I get every time I go in for a scan.  “No, I don’t have a uterus….” “Oh my goodness!  you are so young though!!”  “Yes, I know” In my head what I am really thinking is “YES! I fucking know!  Thank you for being the 1 millionth technician to say that to me!” I can be a real bitch min my head sometimes, haha.

When the doctor came back he was accompanied by his wife, my OB. It was a cyst, and a large one that ruptured.  It looked like there might be some bleeding so we needed to get me into surgery now to repair.  “First I need to ask you a question, do you want me to save your ovary?”.  I hesitated to answer.  I asked if I could think about it while speaking to my boyfriend about it.  My parents showed up and immediately I knew I must have looked like death because my moms face was just about the most worried I had ever seen her (She later described to me that I looked like all the blood had drained from me, I was pale and grey).  I was glad she was there for us to quickly talk about my ovary.  When the doctor came back about 5-10 minutes later to take me in to surgery she asked again.  “Yes, I said, I want you to remove the ovary. One less problem to deal with, I can’t do this anymore.” and I was out.  As I woke up and got out of the groggy state the doctors both came in to talk to me about what happened and how everything went.  “It was really bad when we got in there.  The cyst rupture was so major that you were bleeding internally.  We are not sure why the scan didn’t pick up all the bleeding but you would have died if we didn’t do the surgery.  A few things you need to know about the procedure as well.  We removed the ovary, but even if you told us to save it we would not have been able to.  We also decided since we were in there and since you have had so much done, to remove the appendix.”  I laughed “2 for one deal! I like it”.  I was mostly relieved to hear that regardless of my choosing to have the ovary removed, it would have come out anyways.  It made me feel much less regretful about the whole thing.  And that was that.  I started hormone treatment and never looked back.  I had my 10 years of “womanly” experience and issues and 10 years was enough!

So these are the big stories.  The ones that make people squirm, or sympathetic, or just say holy crap.  The toughest of the tough stories basically.  Everything else in between, when you have a chronic illness, just becomes part of life.  It makes it way in to my routine, it doesn’t have the big shock factor effect anymore, when something new happens it’s just, ok here we go again.  Up to now I have passed 98 kidneys stones and had 26 surgeries.  Every year I see several doctors per month, visit ER’s as often as I need, usually pass a kidney stone every month, and when new issues arise, it’s back to the doctor to start investigating.  Recently in the last 1 1/2 – 2 years many of you may have seen on Facebook posts about me having an autoimmune disease.  I was diagnosed to Rheumatoid arthritis and put on chemo medications to treat.  I have since gone to a few other specialists as my symptoms were not improving and in fact were getting worse, and found that this was a mis diagnosis.  You can imagine how pissed off I was about that.  I was put on such a variety of terrible mediations for over a year that made me so sick and unable to work full time.  I was experiencing, severe fatigue, muscle pain, joint pain, fainting episodes and so many other things.  We attributed some of these as reactions to the medications, but things kept getting worse.  I went to an endocrinologist on my kidney specialists recommendation (he is the best after all!), she was more thorough than any doctor I have ever been to.  EVER.  She took 16 tubes of blood on my first appointment.  She had me tested for every thing in the world it seems.  I had scans, blood work, 24 hour urine tests, glucose tests, heart tests and more.  2 of the issues she found were so ridiculously easy and obvious it is unnerving to think no one else thought to test for these.  1. B-12 deficiency, but not just deficient, she didn’t know how I was standing I was so severely low, but also extremely common. 2, Hypoglycemia another very standard test and both of these easily treated and managed and fixed a majority of my symptoms.  I feel a million times better and have all my energy back!  I seriously was so low on energy I thought I would never be able to work again.  I had lost more memory than usual, I could not even think properly and my work definitely suffered from this.

The last diagnosis took a little more time.  My doctor suspected adrenal glad issues and had me tested for these.  The tests showed I had high aldosterone and high plasma renin, indicating they were correct in looking at the adrenals, but the other tests to diagnose were normal.  It was determined that there is a blood flow issue to my kidneys.  After determining that this blood flow issue was not from my arteries to the kidneys (which would have been the better, and fixable option) I received the news I was hoping never to hear about my kidneys.  I have developed a rare condition that causes scar tissue to build up in the kidneys.  The scar tissue is starting to block blood flow inside the kidney.  No cause is known and neither is there any form of treatment as only about 7 in 1 million get this kidney development.  As my brother would say, “well if anything is rare or in the 1 % it probably is what you have.”  We laugh about it, but it’s kind of sadly true…  What this does mean is that my kidney function will and has started to decline.  We don’t know what the timeline will be but as we monitor and once I get to a specific range we will be able to better plan for this.  The hope is that it is in just 1 kidney and will stay that way.  The part for me that sucks the most is that it causes chronic pain, on top of my MSK which also causes chronic pain.  My pain levels have greatly increased over the past 3-4 years now that the nerves I had cut at the Mayo clinic have grown back.  It wasn’t until these symptoms got worse the last 6 months -1 year that it has been increasing quickly.  My doctor wasn’t sure why as we have had steady results of my stones improving (i.e they are there but smaller and passable).  Now we know why…

As I have taken in this new news, I recite as always, Life goes on.  Because what else can I do?  Does it suck? Yes, I would be lying if I said any differently.  Is it more difficult for me to do normal daily tasks? Yes.  Do I ever want to just throw in the towel? Yes, I have those days, but I think most people do.  Do I get angry that I have to be the one to go through all of this? Yes, I’d like to say I am a bigger person, or say something like well it has made me who I am today and I am a stronger person for it, which is true at times, but other times I just get plain angry.  The way I see it is this.  I can sit on my ass all day, being sad, mad, pissed off even at the world for giving me a shit deal, or I can live and enjoy what little time I will have on this earth, doing the things I want to do, being with the people I want to be with, and LIVING.  I will have the days where I will do the opposite.  I will melt into my couch, throw a pity party and go into a comatose state watching Netflix, but most days I just want to be as normal as I can be.  Now, I have meds to help me be as normal as possible, but like I said before, it’s the people that keep me truly going.  To that point, this is exactly why I have started this blog. Millions of people across the world have chronic illness.  Millions of people have stories just like mine, have much worse situations they are in, or things they have experienced.  I am just one person, but I want to help as many people as I can, going through any kind of illness, or knowing someone that is going through something, or just anyone, to get through life day by day.  I want to help people dealing with the medical system, who cannot possibly go to one more doctor, just don’t know where to start, need advice on dealing with insurance, medical bills, how to be sick and work, and be a parent, you name it.  I already have an extensive list of subjects I will cover, because I don’t want everyone else to have to experience going to 10 doctors to get a diagnosis, or if you do… how to not want to pull your hair out doing it!  So this is it, my background, my credentials for starting a blog with this purpose.  I truly hope as we start the next series of this blog you find little bits of helpful information. I have comment sections open as we move forward for anyone to provide feedback and/or suggestions for topics!  I hope you enjoyed the background series, on to the next because Life Goes On!

-Just a Regular Sick Girl

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