I have always vowed to keep my blog "real" and "raw"- Even though these things tend to get me into awkward conversations at family dinners or random text chains like, "I read your blog. Is everything ok?" Sometimes it's hard for people to read the realness of someones life in print or online. "How could they just put all of that out there for the world to read? Ever heard of privacy?" I get that. I really do, but I what I "get" even more is the fact that I have learned and grown more in my life from just being me. Just being raw and throwing it out there. It may be weird or offensive to some, but it may also be compelling and healing to others, and that's what I am really going for here.
So, I digress..
As you can see, I haven't blogged in over a month. Although that is par for the course in some seasons of my life, this one has an actual reasoning behind it.
I knew I couldn't jump back on my blog without posting this post first. Because it would be fake. The people who know me the best and my vow to "keep it raw" would instantly call me a phony. "You just skipped over that one little token in your life and then hustled on over to some post about curtains or your newest read?" So, I put it off. Uncertain what to say and how to phrase it. But here we are.
I've been sick.
*Now, let me start with a disclaimer that I am uncertain how to verbalize. I'm OK. I'm not going to die. I'm going to be totally fine and mostly already am. I didn't endure some amazing tragedy that will render me on the Michael and Kelly show with a last wish ticket to DisneyLand. Regardless of how small this illness has been in the grand scheme of life, it has been real to me and taught me some things I don't think I would have learned elsewhere.
Back in the Spring/Summer, I started to experience some odd swelling in my ankles. It was very random and not terribly concerning at first, so I mostly dismissed it with the thought that maybe I was retaining water because of the hot temperatures or salty foods I had eaten. The swelling would come and go, staying for a week or two and then going away only to return with more ferocity each time.
I tried a few things here and there-- diuretic medicines, essential oils, salt baths, herbs and supplements, massages, exercises. You name it, I tried it. My obsession with the swelling and finding a remedy for it only got worse as time went on. I logged everything I put into my body- every glass of water, every supplement, every shred of lettuce or cup of coffee. I logged everything I did- exercise, sleeping, standing.
I went to a concert with some friends in September and my ankles were so swollen it was hurtful to walk, but also very embarrassing. My ankles looked like elephants in my "skinny" jeans. My legs looked like stalks with no variation in the width from my knee to my ankle. As a girl who has always been conscious of her weight and figure, it was demoralizing. The worst part is that I just felt so out of control. The more time went on and the more dramatic things became. The swelling was still coming and going, but never really fully going away and always coming back more severe. My weight was slowly creeping up and my 6am workouts and pesky diet was not curbing it. Obviously, my concern continued to grow, but the worst part was that pit in my stomach.
Don't misunderstand this post as one of which I tried only home remedies. I went to doctors. Multiple doctors. One told me I needed to stop taking my birth control medicine. So, I did. No result. Another told me that I must have some blood flow issue because I stood with my knees hyperextended naturally. Okkkkk. Another gave me a whole slew of things to try-- compression hose (Grandma Status), more diuretics. All of these things were to no avail. No results. Just more obsession with it. More stress and more confusion.
November 19th rolled around like any other swollen day but throughout the day things escalated to an extreme I had never experienced. I am normally a 120ish pound girl. With all of the swelling and water retention I had experienced, my "new weight" was more like 127-130. I weighed in that morning like I always do (to log in my psycho person health journal) and I weighed 132. A little higher than normal, but nothing shocking. Throughout the day I continued to feel worse. Bloated, swollen and aching. Tears welled up in my eyes that afternoon as I continuously searched for answers online. I looked 9 months pregnant. My stomach was so swollen. My legs and knees so huge. I came home around 5pm and weighed myself again only to see a whopping 150 on the scale.
My heart was silent.
Something is wrong.
I went to ER. Against my better judgement. Mostly because I was scared.
I thought for sure they would do some tests and give me something to go home with.
After countless amounts of tests and checks, the doctor came in around midnight to say they were admitting me. My protein in my urine was coming in at a 5,000 (Normal range is 0-5) and until they knew why, they just wanted to keep me to run some more tests and get to the bottom of it.
*Obviously, my drama queen moment hit and I started to cry. I see why now, though. My whole life I have associated hospitals with Dad. I don't have very many happy memories in a hospital. When I am in a hospital I think of them wheeling Dad past me the day after he had his stroke-- putting him into an elevator right after they told us the severity of his stroke and how he "wouldn't pull out of it."
I don't think about all the times I have been to the hospital to hold sweet babies and witness exciting things. I think of Dad.
So, naturally, I cried. #dramaqueen*
I spent 3 nights in the hospital and had gained over 42 pounds in that time period. My normal 125lb frame was now up to almost 170. I was finally allowed to take a shower one night which contained little washing and mostly disgusted crying. 42 extra pounds of random, pudgy, pitting edema in weird spots of my body. There was no rhyme or reason to where the swelling pooled. I looked mostly like I had a really big memory foam pillow in my midsection and then throw in some elephant legs.
Finally my doctor told me she thought I had a nephrotic syndrome (a disease of the kidney) which could only be fully diagnosed with a kidney biopsy. Which they couldn't do for two more days and she wanted me to stay until that time. No. Just NO. I can go home and come back. I am ok. PLEASE, for the love of God, let me go home. It took some convincing but she did. Those two days at home were torturesome. The swelling went down NONE. It only got worse.
Biopsy day rolls around- another day in the hospital. I looked like a heroin addict because of all my blown and bruised veins. And I also looked 9 months pregnant. Who doesn't love a good 9-month pregnant heroin addict that has such fat feet she can only wear mismatched flip flops in dead of winter? Lets not forget the fact that I fit into exactly three maxi dresses that I owned.
Results from the biopsy finally came in two days later-- the day before Thanksgiving.
I was diagnosed with a rare disease called Minimal Change Disease. Minimal Change Disease is a disease of the kidney in which there is damage to the blood vessels inside the nephron which are used to make urine and produce waste. So, basically, because these vessels are not functioning, your body retains all the water/waste inside instead of releasing it properly through urination. It causes severe fluid retention in your tissues. Click here for more information.
Minimal change is very rare, very rare in adults, very little is known about it, but it is also very treatable. Most adult patients can be treated with about 6 months of medications that will put it into a "relapse" state and not affect them indefinitely. This news was very exciting because, of course, I'm thinking "drug me up, Dr Green and get this weight of me." ( I think I might have actually said that to her, too, which is concerning.) Too bad it wasn't that easy. I started medications on a Friday and fully expected to be back to some normality by Monday. Riiiiight. NOTHING had changed by Monday. If anything, it has gotten worse. I was in complete misery. All I could do was lay around like a big lub and pray for time to roll around so I could take another dose of medicine. I was in so much pain and discomfort because of the swelling. It was difficult to sleep. VERY difficult to walk and even more difficult to shower or do everyday tasks.
A few days later, Dr Green had pity on me at my one week checkup and was so concerned for my lack of progress that she changed up my medicines. I remember going home that night and just letting it all out. (It's a good thing I was home alone that night- David may have vomited over the mass hysteria I was throwing down in the house. It was rough, friends.) After a while of screaming and crying like a four year old, I finally decided to draw myself a big bath. I was creeping through a friends Instagram and she posted a picture that said "Amazing things happen when you chose to love yourself." I don't know why this hit me so hard. Obviously, these weeks/months had contained plenty of prayers and petitions for some help and relief, but I just wasn't getting anything. My heart wasn't where it needed to me. I needed to REALLY let it go. So, I did. I sat in that bath until the water ran cold- crying out to God, not for "healing of my body" but healing of my heart. Let me let it go. If this is the life I'm going to have to live from now, make me understand-- make me get over it-- make me deal with it. Take me over, God. Whatever happens, just take it. I don't want it.
Now, this all sounds super dramatic because to me it was.
I don't have cancer. I didn't lose a child or a spouse. My disease is manageable and potentially semi-short term. If I had to draw a disease out of a bucket, I would probably pick this because there are so many millions of things that are so much worse. I get that. My gratitude is so great that this is "all" that I have. But in those moments, my desperation was real and raw.
Friday morning after my crazy person prayer bath, I remembered the picture I saw on Instagram and I decided that I was just going to love myself. Memory Foam body and all. Whatever changes may come, so be it.
By the end of the day Friday I had lost almost 10 lbs. Yikes!
I woke up Saturday morning and has lost around 7 more.
I woke up Sunday morning and has lost 12 more. I had ankles again!
I woke up Monday and has lost 10 more.
And this cycle continued steadily until I was back down to 121 pounds. I felt like these four days of my life were something out of body. I had gone from one extreme to having no control over the swelling and weight gain to the other extreme of having no control over the swelling and weight loss.
Then it hit me. Maybe I don't.
Maybe my body is but a vessel.
Let me just go on and get all Mega-Revival-Church-Campy-Hell-Fire-and-Brimstone on ya and just say that maybe God really is in control. That just got real. I'm not a preachy, in your face Christian. I'm just not. But to say that this disease hasn't dramatically affected my faith would be a lie.
So, what now?
6 months of medications
Weekly Doctor visits which turn into monthly doctor visits, which eventually turn into an annual doctor visit with my Nephrologist (in a dialysis clinic, I might add, which is ....well...disturbing)
High doses of medicines that really hamper my sleep, make me hungry all the time, "round out my face" and put my hormones into whack mode sometimes. ("How are your hormones?")
BUT, a full recovery is expected eventually.
Whoa. That was alot of information. So there it is. THE MAIN reason I wanted to do this post is because when I was first diagnosed, by obsession shifted to research on MCD and how people deal with it, etc. The sad news is there is very small amounts of information out there. It was very sad to see how little information could be obtained. BUT I did find Vic. My new best British friend, who had an almost identical situation as myself. Reading her blog and accounts of MCD gave me so much hope. I want to be that hope for someone else. I spared the nasty pictures of my body while all of this was going on, but I would certainly be happy to share. So, please, please, please, if anyone out there is struggling with this disorder or one similar, please reach out to me. I would love nothing more than to talk to you about it.
MCD is a daily, minor struggle. It has certainly changed my outlook on my body, my diet, my everyday function, etc. Our daily conveniences like taking a shower or walking to the bathroom can all be taken away from us so quickly. I still struggle daily trying to monitor my emotions caused by these medicines, monitor my food intake, my aches, pains and exercise. But most importantly, my gratitude. I am forever thankful of the non-severity of this, but also because of what the last 4 weeks has brought to my heart.
I am but a vessel.