Healing is Itchy

**This post is a TMI medical post. This is your warning.**

For the first time in Alice's educational career, I am missing Field Day. This makes me so very sad, I've gotten emotional a few times today. BUT I have a very good reason for missing it.

Last Tuesday, I had a hysterectomy. 

Who has two thumbs and no uterus?! 

THIS GIRL!! (points to self)

For years, I have had terrible cycles. Debilitatingly painful, heavy, inconsistent cycles. I have requested surgery and have always been told the same thing - "with your medical history, no doctor is ever going to be willing to do that. Periods are just painful sometimes."

So I've managed with muscle relaxers and heavy pain meds that don't work. I've stayed in bed with the lights off in the only position that doesn't hurt. I've lost sleep due to pain. I've sat with a heating pad for hours hoping to relieve a little bit of the discomfort. 

Nothing helps. But, you know, periods are just painful sometimes.

My yearly visit arrived and I wasn't able to schedule with my usual OB/GYN. My medical system works to where I can pick any doctor available. So by chance and availability, I met Dr. Beasley in December. 

I told her my history and my issues. And for the first time, I had a doctor say "well, let's order an ultrasound and see if there is anything additional going on."

She listened.

I had the ultrasound and was diagnosed with adenomyosis. This can be treated with hormone replacements however, due to my clotting condition, I can't touch a hormone. So, the only other way to fix the problem is surgery. And this doctor looked at all the things, thought about it and said, "since you haven't had a clotting issue in so long, I think we can do that."

Any surgery for me means I have to bridge my clotting medication. I have to switch from my normal medicine to one that stays in my system for less time. I go from pills to two shots to the tummy daily. This bridge happens leading up to the surgery and after the surgery until my INR is up to where it needs to be to be therapeutic. (I'm still taking the shots and they are the lamest part of this process.) 

Because of this - I had to see a hematologist. (If you have been with me for any amount of time, you know my spiritual gift is collecting ologists.) I met with one originally years ago when I moved over to the Kelsey Seybold system. She said their Coumadin Clinic would handle my results and I shouldn't have to see her again. Well, now I had to see her only I didn't want to drive that far. So I met a new hematologist closer to home and she says she wants to actually see me occasionally. I mean, that's fair. 

We scheduled the surgery for a Tuesday knowing I would need to stay the night because my doctor wanted to be able to start my blood thinners again. My mom stayed with me and we had a nice time.

Surgery took a bit longer than planned due to extra scar tissue. Everything went well though and I have had zero issues with the healing process. What ever anesthesia did to keep me from being nauseous - BLESS. THEM. I was up and moving around Tuesday evening with no issues.  

The doctor came by Wednesday to check on me. She showed me pictures of the before and after. Before they started the surgery, they found blood in my abdomen. Because my uterus is the gift that keeps on giving, I started my period two days before surgery - one last gift. She said I had undiagnosed endometriosis and have been bleeding in to my abdomen for some unknown amount of time during my cycles. The colleague she had with her told her it was one of the worst cases she's seen in her 20+ years of doing this. 

That's on brand for me.

I came home and told my Beloved I spent years feeling like I was being overdramatic and that my pain was way worse in my head than in reality.

Because periods are just painful sometimes.

In my years of collecting ologists, I am quick to find a new doctor if I feel like they are not listening. However, I have not been that way with my OB/GYNs because maybe the pain is just bad to me. Had I not ever scheduled an appointment with this doctor, I might not have ever had the validation of knowing something was really wrong. 

I am so thankful for this life improving surgery. For a doctor willing to take the extra step. For an anesthesia team who knew their stuff. For my supportive Beloved who took care of all the things. For my Mom who is my best medical advocate. For my loving village who stepped in to help with Alice. For the same village sending me pictures of Alice today at her very last elementary Field Day. For an abdominal wrap and Tylenol (the good drugs made me itchy because of course they did.) For the two extra drawers we'll now have in the bathroom. For not having two women in the house on their cycles at the same time (this hasn't been an issue yet - but we know it's coming.)

My incisions are healing. My stomach is bruised. I'm a little itchy because the healing process is itchy. My heart is happy.

It wasn't all in my head.

Ladies, if you are hurting and your doctor is diminishing your pain - find a different doctor.

Because periods should not always be that painful sometimes....

Until next time.... 

My, my, my, my Corona

This post comes from an angry place. This is your warning.

We were careful. We were mindful. We were diligent. 

We have not seen the inside of a restaurant since March. We have been to extremely limited, intimate gatherings in controlled environments with the same circle of people.

We have been paranoid. We have been told we are silly for being so paranoid. We watched as people went about their lives, business as usual. 

A few weeks ago we hugged a family member who has not been as diligent or closed off as we prefer. And they gave us Covid-19. 

4 hours with someone within our circle and it took us out for 3 weeks. 

I pulled Alice from school and transitioned her back to virtual. My Beloved and I had all the lame symptoms associated with the Rona. We are LUCKY things were not worse. 

I made a Facebook post about how I felt Covid has been the worst of all the medical issues I've had to face. I caught some static for it. 

"I'm pretty sure when you were in the ICU was worse, Timberley."

Do you know what I remember about my first several days in the ICU after Alice was born? Nothing. Not a darn thing.

"What about when you were dealing with your boob stuff?" 

While that stuff SUCKED - I could completely function while I was going through it. It didn't knock me on my butt. I could manage my day to day responsibilities.

What was worse about having the Rona was the fact that my number 1 responsibility could not be to heal. I still had to mom and teach and work and take care of a house - while sick.

The post I made to Facebook was done wrapped in a blanket with a fever and watery eyes wearing a mask, sitting on the floor of Alice's room playing raft. Her world didn't stop because we were too sick to manage it. She was understanding but she's also a kid who is TIRED of being locked down. She is a kid who had JUST managed to go back to school with her friends but found herself locked down.....again, missing crucial classroom time.

I also got to deal with the nurse from Alice's doctor's office who spoke to me like I was so irresponsible to allow her to be exposed to the Rona. She made me feel worse on top of worse. "What are you going to do to protect her?!" What would you suggest?! Put my 8 year old up in a hotel for a few weeks?! 

We did THE BEST we could to keep her safe and we are THANKFUL she seems to have missed it. 

I didn't kiss or hug my kid for almost two weeks. That SUCKS. 

The fear was also REAL fun, y'all. 

What if we get sick enough to need to go to the hospital? What happens to Alice?

What happens if Alice gets sick enough to go to the hospital? Who would be there to sit with her?

What happens if this is something that messes with my wonky DNA and it causes me to clot? Do I just get to stroke out with my husband sick in the bed and my kid avoiding math? 

On repeat in my head every day while I was still working. 

My Beloved had a harder time and was down for most of it. We both cannot afford to be down at the same time with a kid in the house. That leaves me.

So yes, this was harder than all the other times I was able to prioritize healing over anything else. 

I have been so angry. 

I am angry we got sick. I am angry Alice missed time in the classroom. I am angry that this seems to not have made a difference in anyone's attitude about being safe during a friggin Pandemic.

I watch people post pictures from restaurants and pumpkin patches and parties and I get so very angry.

I am not willing to risk my health or my family's health again so we will remain cut off from family and friends until this is done unless I know for sure those people have been nothing but careful and masks will probably be involved. 

We've had heavy discussions about what the holidays will look like this year. They will probably look a lot like lockdown but with holiday decorations.

I've heard "don't you trust God to protect you from getting sick?" I trust God to give me common sense during a pandemic and the means and dedication to not knowingly put my family at risk. 

We are happy to be feeling better. We are thankful we did not require a trip to the hospital. It was touch and go with my Beloved's fever! We are even more paranoid about being around people. 

I do not see the end to this any time soon because not enough people are willing to do what it takes to make it stop. 

I also selfishly feel like only the naysayers should end up with it. 

God and I are working on my attitude. Mostly He feels I'm a bit justified in my anger so that's where we currently are.

Until next time.....

March Sadness, the Remix Edition

Y'all, I just don't know what it is about me and the month of March. We just cannot seem to be friends. 

It has been a heavy, heavy month and I am hoping April is lighter.

7 days: That's how many days Alice went to school in the month of March and one of those days was our Zoo trip. She missed the first full week due to the flu, the next week was Spring Break and then the following week she only got to go to school once due to a nasty plant fire in Deer Park.

To say I was spent is an understatement. I am not sure how I am going to survive summer. 

God Bless Fraud Alert: The middle of Spring Break I get a text from my credit card company asking if I just charged more than $900 to GoDaddy. That would be a hard no. So I'm standing in Target with the card people making sure the card gets cancelled. And of course it's the one that all my monthly charges go to because that's how the world works. It takes about a week to get a new card and then I had to go through all the changing over. I *think* I have everything moved over. Time will tell......

New Casting: I've reached the breaking point with 90% of my medical professionals so I am starting all over. ALL OVER!!!!!! 
1. I haven't heard from my breast surgeon since November. This does not thrill me.
2. The company that monitors my INR machine has turned off my account again because I have only tested once a month for a few months and my order is for 2. This is also the company that had me throw away 4 boxes of test strips due to a recall and only sent 1 box as a replacement. I mentioned I don't have enough strips and she asked why I haven't mentioned this before. "I have, EVERY TIME I call!" This all means I have to get a new order from my Hematologist before I can speak to them again.
3. I have been trying to get an appointment to see my Hematologist since January only they can't find the referral my PCP sent over. In fact, the 4 times I have spoken to them they have let me know that I haven't had an active referral since 2016. This is not AT ALL the truth since I am diligent and dedicated and put alarms in my phone to request updated referrals because I attempt to be on top of my ish. I have resorted to snapping and impatience EVERY TIME I have spoken to the office. They can't spell my name right and then ask if I'm a new patient. Nope, I've seen him the last 6 years. (Side rant: I called to have my referral for my Hematologist renewed in January and the girl in the PCP office said it expired the day before. I told her I know, that's why I need a new one. She says, "well, it won't be renewal then because it's expired, it will just be a new referral." I might have replied with something testy. JUST DO IT!!!!!
4. My Urologist has retired and my Rheumatologist left the practice unexpectedly. I have seen her twice. That's it. And my prescription is up in about 60 days so I need a new one. Finding a Rheumatologist is lame but it's okay because I didn't like her anyway. 
5. I hate my PCP's office. They never have appointments when I need them.
Me "I think I have an infection." Them "the doctor can see you next Thursday at 2pm or you can come in as a walk-in today." Then I sit in the office for about 2 hours to see a PA who inevitably will call me before I make it to the pharmacy with a change because "you are on Coumadin." Yep, I have been for the last 6 years so I'm pretty confident it is in my chart.

Back when I was collecting specialists, my then Rheumatologist (who I loved but stopped taking my insurance) recommended I see an Internal Medicine doctor and not a General Practitioner. She thinks I need someone to look at the big picture and not just the immediate. She is not wrong. I stuck with who I had because it was easy and change is dumb. But I'm at my point of enough so I'm starting over. I've decided to go back to the Kelsey-Seybold system. I am hoping it will make my meeting with specialists and all the testing I have to have done so much easier. I need easier. We will see how it works out. 

20 Years: It was 20 years since we lost Dad this past week. 20. I was worried about my state of mind all month. My Beloved brought home some Corona for me and I got through the day with no issues. Sometimes 20 years just feels like a Wednesday. And then on Saturday as I was driving to Book Club, I had to pass the cemetery so I thought I would stop. I cried most of the way there. I hate cemeteries. I never feel closer to Dad when I'm there. I spend more time talking to him in my car when it's just us then I ever would standing over a stone. So much so that I have only been out to his grave a handful of times and I can't remember the last time I stopped in. It has been so long that I had to call Mom and ask her where he was. What kind of daughter can't find her dead dad?! 

Sometimes 20 years feels like a Wednesday. And sometimes 20 years, plus a few days feels like the bottom has fallen out again.

This year I've been a bit more angry than I usually have been. Usually when the dam breaks, I am just broken but lately I've been mad at him and his choices. I was dwelling too much a few months ago and in sadness said that if only he had loved me enough to come to my play that night, he might would still be alive. My Beloved said that's a heavy weight I don't need to be carrying.

My Beloved loves me through the breaks. Every time. (As of today, the dam has been fortified and I am in a good place.)

So I'm hoping for a lighter April. One with more school, less medical professional stress and no more random naked men. Although, he did add a break for humor.

Until next time.......

Time

At exactly 2:30pm every day - I run out.

And sometimes I have a little Dr. Pepper to help me through.

December will be a particularly difficult month so I'm doing what I can to remain focused and on top of things.

We will survive!

Now I feel like it's time for a health update.

I had a followup ultrasound done in November. 

I was hoping they would find nothing.

But, alas.....

The Radiologist said the spot is more defined and clearly shaped. He recommended a biopsy.

I told him,"it's granulomatous mastitis."

He said, "oh! That's you! Okay, you don't need a biopsy!"

Lord, give me strength.

I saw my breast surgeon and she was happy to see it in an actual mass that can be removed. December being a hard month means it will be done in January or February.

I have been on steroids since April 2017. For the past several months I have only been taking 5mg. That's not a lot. However, I ran out.

I called the doctor for a refill and she said to stop until surgery.

This brings me no joy.

1. She didn't have me taper the dose. I have never not had to taper steroid use. Never.
2. If what is left in my boob decides to abscess without my use of steroids between now and surgery - I. WILL. LOSE. MY. MIND.

I took my last steroid last Friday and I'm all itchy, my face feels tingly and flushed and my right boob hurts again.

Everything is dumb.

So. Very. Dumb.

But December is too busy for me to get all worked up about it. So I'm going to pretend we're all fine. Just......fine......

Until next time.......

Has it been that long?!

I clicked on my blog while I was working on the computer today and noticed my last post was in October. 

OCTOBER!!!

That's SO LONG ago!

I have been so very neglectful. 

So I thought, how do I fix this!? Do I post about holidays? Do I think real hard about something funny or witty that has happened since the start of November? Do I recap 2017? (Let's actually never speak of 2017 again, k, thanks.)

Or do I just pick up from today?

Yes, that seems less stressful. Let's start there....

Health Update. I developed a 4th abscess that FINALLY drained in December. And I hope this is the last time ever in my life I have to type that sentence. REAL TALK! I saw my Boob doctor yesterday and she feels like things are finally looking up. She lowered my steroids and we're going to ride along until the skin heals and I can redo images, however, if the images look good, I might be over this. 

These are my hopes and prayers for the next few months: that the ultrasound and mammogram will be conclusive and that I will NOT need another MRI. They are EXPENSIVE and UNCOMFORTABLE. So I'm praying for conclusive evidence. And I am also hopeful that this will never, ever return. Like, EVER. I would also like to be off the steroids as soon as humanly possible.

It's always sobering when I meet with my Breast Specialist. She's a surgeon so the wait times are always extensive and there's a temptation to be frustrated and annoyed. However, I understand that the woman in the room next to me is there to discuss her recent breast cancer diagnosis and suddenly my time isn't important. Because while what I have been dealing with for the past year (A! YEAR!) isn't fun - it's also not completely life shattering either. So I don't mind waiting. 

Working Momma. I started a new job in October. It is what takes up most of my time while Alice is at school so my writing time is limited. It's a scheduling job - I have a client and I contact his clients to book appointments. It's not hard and it's work-from-home and I can set my own hours. I have hesitated in sharing this because it was still so new, however, so far it's going well. Alice is adjusting to mom being on the phone some when she has a day off. This summer will be a challenge but she's old enough to understand and manage on her own. It has been an adjustment transitioning into work mode while not neglecting other responsibilities. Spoiler alert - the house is almost always a mess. Bless. I will learn to be a dignified house keeper one day.....maybe. 

The Holidays. We had a simply wonderful holiday season! Alice loved everything Christmas. We celebrated with family. We ate a lot. We drank a lot. We were merry. It was lovely. 

A Fresh Year. I was so thankful to end 2017. The stress. The anxiety. The frustration. The brokenness. I have high hopes for 2018 but I refuse to put anything in writing. I also refuse to recap stupid 2017. Nope. Let's just skip it, over and over and over again. 

I want to see things with fresh, patient eyes. I want to budget (my least favorite b word ever) better. I want to find time for my creative outlets. I want to lose all the weight I've gained since this medical journey started. I want to be thankful, regardless. 

These are wants and not goals. See - that's less pressure!  Because, as I sing to our usually screaming 5 year old, "you can't always get what you want....." 

I am curious to see what 2018 brings for our little family. I'm hopeful that things will settle down and I can get back to a new normal that doesn't involve weekly doctors visits and all the medical tests in the book. I would LOVE to not receive medical bills for at least 6 months straight! Such hopes......

For now, I will sort of promise that I will attempt to carve out more time to share our world. 

Until next time......

An Update

I haven't mentioned my boob in a while. How refreshing! However, I know some are curious so here goes the update....

Since my last post, I developed a third abscess. It was, by far, the worst. Luckily, it was also the last. 

I stopped going to physical therapy. I have a hand massager that I use on my own at home. It seems to do the trick.

We've tapered my steroids. 

I've plateaued in the healing process. It's discouraging. 

I have one little knot left and it seems to be super comfortable. It's not growing, but it's not shrinking either. 

I left my massager at home while we were on vacation and it did grow a bit. I saw the doctor when we got back and she noticed it too. She also wanted to see what it would do with no steroids so I was told to finish my pills, give it a few days, and see her again.

I took my last steroid on Sunday and by my appointment on Thursday, the spot HURT and the tissue around it was swollen again. 

This isn't surprising. Everything we've read about this stupid disease says it's a long process to heal. Most articles listed 6 - 12 months and we're only at 6 months since diagnosis and treatment. I've come a long way and I've made lots of progress!! But it's a marathon, not a race.

So I'm back on steroids. 

The end goal is to get the spot small enough to surgically remove, however, the tissue around the spot must also be disease-free or this will happen again. With that being said, I will continue the steroids (it's a small dose) until maybe next spring, that way we can ensure all of the tissue is healed. 

Since acquiring me as a patient, my surgeon has had two more cases come to her. 

And all of a sudden I don't feel all that rare anymore, how gross! ;) 

Just kidding. 

Until next time.....

Boobs, schmoobs

I'm totally over boobs. 

They are just one of the dumbest things ever created. 

Well, at least my right one is. So far the left hasn't caused any problems. 

After my last post, I developed a second abscess. 

Go, me! 

This has led to an open wound that I have to treat until all of the 'infection' works its way out.  I have to keep it covered only that usually means that whatever I cover it with gets stuck to it and the scab is ripped off every time it is replaced. This feels AS LOVELY as it sounds. What started as two small holes have now joined forces to create one large hole. 

I googled 'abscess' and immediately regretted it. I can never unsee that. In the event the things I witnessed online happen to me, I will need MUCH stronger meds. 

I also get to go to physical therapy. For my boob. 

This is as awkward as it sounds. 

I lie there while my physical therapist lasers and ultrasounds and rubs by boob while we make small talk. 

Yep. 

Today my therapist called my Boobolist to double check her extremely large printed orders (of which she has me carry a copy in my purse and in the event there is a question, I am to call her). She mentioned my open wound and the doctor told her not to worry about it and to make the hole big enough to get all the stuff out. And then said "have a blessed day." 

Jesus, take the wheel.

I mentioned to her that I was over all of it, wanted the entire thing removed, and I was going to get a knitted boob as a replacement. She said they come with their own issues. I'm willing to look past those. 

When I'm not in physical therapy, I have a hand massager that I have to use at least once a day to rub at it to attempt to break up the tissue. It traveled with me to my In Laws this weekend and my beloved Father in Law laughed when I plugged it in BECAUSE IT IS THE MOST RIDICULOUS THING EVER! I told him it was completely fine to laugh because it's all just so very dumb.

The medical professionals also recommend airing it out as much as I can. Seriously. I'm just supposed to let it all hang out. Girl, no. That's not happening. I spend WAY too much time on Marco Polo talking to my people without paying any attention to what I look like. What if I forgot?! They DO NOT need to see that!! 

I am the most modest person possible. I'm prude even. And here I am, showing every medical professional in all of Houston my boobs. And they always ask to see both! They need a reference, they say. I mean, come on. 

The level of ridiculousness is astounding. 

And there is no end in sight. This could last another 10 months. 10. Months. 

They know nothing about this disease other than 'this worked once' and 'it can take up to 12 months to completely heal.' 12. Months. 

Y'all. 

I am discouraged. 

I am attempting to find the humor! 

But it is hard right now.

And other adulting stresses aren't helping any. 

Writing it down helps. 

I have moments of complete and total defeat and I remind myself that it could be worse. It is worse for some. I am so very, very lucky. I KNOW this. I do not take this for granted. 

But this oozing boob is bollocks. 
.
Until next time....

....when I'll probably STILL be writing about my stupid, stupid boob. 

Side-Effect Sally

So I should probably tell you how I'm doing health wise. 

Since my last post, the abscess drained. It wasn't as bad as I imagined. It wasn't lovely! But it wasn't the ending scene of a horror movie either. I'm actually thankful we were able to speak with the doctor the day before it started oozing so I was slightly prepared. Had it just started bleeding, I would have had a complete and total meltdown and the house might have resembled the prom scene from Carrie.  

I immediately started my steroids and the antibiotics and now I have all the fun stuff that comes with those! I'm hungry ALL OF THE TIME!!!! Seriously. Ravenously hungry. I'd coat the dog in Nutella if it weren't for all his hair hungry. I know it's the Prednisone and I'm trying my best to not snack but it's so hard. And I want all things sweet, which is bad because Prednisone will do wonky things to your blood sugars and I don't want to end this adventure with a Diabetes diagnosis. So I'm having to physically remove temptations from the house. The struggle is REAL. And I have grown dangerously attached to the Iced Caramel Mocha's from McDondald's. SO YUMMY!!!!! BUT SO BAD!! 

The steroids will also mess with your calcium so I've added that to my daily routine, only I have to be careful when I take it during the day so it doesn't mess with my other pills. 

The steroids will also mess with your emotions. I blame all my moods on it now. HOLLA!! When I'm hungry - HULK HUNGRY!! When I'm mad - HULK MAD!! When I was hurting and things were oozing and I was crying over my sink - HULK SAAAAD!! But I'm functioning. And we're taking it day by day. Alice now says "HULK HUNGY!!" It's the cutest! 

I feel puffy and bloated and gross. And my face is starting to breakout. Again, all normal side effects. And since I'm Side-Effect Sally, I get THEM ALL!! Even the obscure ones that are in tiny print at the bottom of the medicine information - yep, those are mine! Steroids compromise your immune system and can result in various forms of yeast infections, ALL of which SUCK and no amount of yogurt consumed will keep me from getting. I now get to swish with Nystatin every 4 hours. Lame. In hopes of not encouraging yeast issues, I have to avoid sweets, caffeine, and alcohol. So double lame.   

When I start new meds, I have to monitor my blood levels closely. I'm a fragile Coumadin taker. It takes a lot to get me therapeutic and not much at all to completely screw it up. So with the addition of the steroids and the antibiotics, things have been a bit dicey. I have a machine that I can check my INR from home. The strips are crazy expensive but on my normal schedule (every 6 - 8 weeks) it saves me the copays of going in. 

For me, therapeutic is 1.9 - 3. I checked it a few weeks ago and it was 8. Actually, it read "> 8" only I didn't realize it didn't go higher than that so there's no telling what it was. I didn't have any of the usual signs of being dangerously high! I didn't have any bruising. My one glass of wine wasn't making me completely loopy. I was having massive palpitations but that could have been the steroids. Regardless, I had to go off the blood thinners, eat my weight in Kale, and recheck every day. I don't usually get to eat Kale, I have to avoid foods high in Vitamin K. I'm not missing much. 

And let me tell you, going from an extremely high INR to a normal INR hurts. It's the weirdest sensation ever. It's like I can feel my blood thickening. My damaged leg hurts, I get horrible headaches, it's crazy! 

We got everything leveled out but it happened again this week. So now we've adjusted my Coumadin and will continue to monitor it as I keep with the treatment plan. 

As far as how I feel, I feel fine! After the oozing, the pain immediately went away. Things have healed well and while there is still some discoloration, the pain is mostly gone. I can sleep on my side again!! HALLELUJAH! I have a heated hand massager that I use to attempt to break up the scar tissue some. Occasionally I will hit something the wrong way and be reminded that things are still healing but for the most part, I'm feeling MUCH better.

I'm not sleeping real well though. Again, something common with the drug. So that's making the days harder and my patience lower but I'm trying!

With steroids, you have to taper them down, you can't just quit. I went from 60 mg to 40 mg this week which makes me hopeful. My hope is that I went through the worst of it already and now we're just healing. I'm hoping the healing goes by a little faster. 

I have another follow up in a few weeks. I'm hoping by then she'll let me start working out again, I think the inactivity is also contributing to my lack of sleep. 

So overall, I'm doing good! 

I'm no longer on the antibiotics and that's nice.

I'm self conscious about how I look so I'll probably be in less pictures in the next few months. I'm frustrated with all of the side effects I'm dealing with and I'm ready to be done with it all. 

But mainly I'm glad the pain is mostly gone and there's an end in sight. 

Here's hoping it keeps going that way.

Until next time.....

D is for Diagnosis

Well, it's NOT cancer! 

However, it will be time consuming, painful, and extremely annoying. 

After tons of tests and several biopsies, I have been diagnosed with Granulomatous Mastitis. 

It's rare.

Yay.

It's also chronic.

Double yay.

And the treatment is not immediate. It's a long haul game. It's 5 - 10 months of high doses of steroids along with antibiotics. It'll be painful and it will eventually form an abscess that will eventually start to purge itself. 

Triple yay. 

When I say this is rare - it's really, really rare. My Breast Specialist has seen it twice in her 22 years in the business. I'm her #2. Her colleague who has been doing this longer than her has had 3 cases. 

There is no way to predict it. No way to prevent it. No way to tell where it came from. In some cases it proves to be an autoimmune issue. So, that's just lovely. 

Now I'm waiting on my Boobologist to contact my Rheumatologist and my Hematologist to go over medications. You see, I'm a trial because I am on blood thinners and I am also on a medication for my previous run-in with autoimmune issues. So they have to work through and decide what will work best for me. For a regular patient, the main goal would be to cure the infection. For me, the main goal is to keep me from clotting or bleeding out while we cure the infection. And Coumadin does not play well with others. At all. Too much bleeding is not a good thing. 

I am SO relieved it's not cancer.

SO RELIEVED!

I've spent the last two months absolutely terrified. "How will I tell Alice? What if I'm not strong enough to get through it? What if it's spreading while I'm sitting here WAITING ON MEDICAL PROFESSIONALS??!"

Yes, I am relieved. 

I might actually sleep tonight.

However, I do wish the answer was easier. I wish there was a quick fix. I am so very tired of the pain. And I'm not really looking forward to the medications.

I will go on antibiotics which will cause ALL LOADS of problems. These problems will be extremely uncomfortable. Good times. 

Steroids cause ALL LOADS of side effects that I am NOT looking forward to. When I left the hospital with Alice, I was on steroids. I stayed on them for many months and I gained so much weight. And that dose was small! The doctor mentioned 40 - 60 mg of steroids today. So the vanity side of me is so very, very discouraged. I worked so hard to get to a place where I felt better about myself in pictures and now I'm going to gain it all back and then some. Steroids are going to cause MAJOR mood swings and acne. I'm going to look like a pubescent Pooh Bear. 

AND then there's the pain and drainage. 

And I feel absolutely horrible having these feelings when it could have been much worse. But there it is. 

Yesterday I was crying about potentially losing my hair and my life. And today I'm crying because I'm going to look like a chubby bunny in pictures and none of my clothes are going to fit....again. 

And I know it's horribly selfish. But, again, there it is. 

So now I'm supposed to ice and heat and take Tylenol for the pain. We bought gauze and hand sanitizer for for the potential oozing, which just sounds delightful! And we bought an ace wrap because compression is key. We also bought two bottles of wine because I've earned them.

Now for the special mentions.

I am so thankful for my Boobologist who finally made things happen. Not fun things! But things nonetheless. 

I am also thankful for my mom and my wonderful in-law's who jumped in to help with Alice. It was way less stressful to know she was taken care of. 

I have a village of people who prayed and sent happy thoughts and well wishes and good vibes. I am thankful for each of you.

I am also thankful Tami and Shani were both wrong and it was NOT my twin. ;)

But most of all, I'm thankful for my Beloved. He's had to deal with an absolute basket-case and he handles it so well. He loves me where I am. Always. No matter what rare $#%@ I come home with. 

Tonight I will have a drink to Not Cancer and to answers and to an eventual end. 

Here's hoping I can add to the rare and be a case that heals quickly! 

Now I'm going to go ice my boob. ;)

Until next time.....

RECASTING!

Y'all, March and I do not get along.

When I left my original Boobologist's office on March 1st, it was with the understanding that they were working on scheduling a biopsy surgery for first thing on the 13th (today) and would call with the details when finalized. 

And I never heard from them again. I called almost every day because they needed to contact my Hematologist to discuss what would need to be done with my medication. 

I called to leave my cell number.

I called to leave my Hematologist number.

I called to say, "I can't have surgery next Monday without instructions from my Hematologist" about a MILLION TIMES! 

I was told all of these things were being added to my chart.

Because I understand the seriousness of my medications, I emailed my Hematologist the afternoon I got home from the surgeon's office. His nurse said she would call me by end of day or the next day with directions. And I never heard back from her either.

The next Monday I called and spoke with someone else in the office who I could tell wouldn't be helpful. And Tuesday I finally contacted my favorite nurse. I don't like to call her first because I'm pretty sure it's not her job! She isn't really my doctor's nurse! BUT she loves me and she's good at her job. 

She immediately lets the PA know she needs to call me. 

My right arm has been sore for a few weeks now and my joints have been a bit puffy. And once again, I worried about a blood clot. So at 4:30pm on Tuesday night, I loaded Alice in the car and I headed to the ER. Hint for future reference: if ever you need to go to the ER, say you think it's a clot. They pay attention really quick. 

As I'm filling out paperwork, the PA from my Hematology office calls. I let her know where I am and she says "you could have called me, I would have ordered a Doppler." GIRL!! DO NOT START!! I've been trying to get SOME SORT OF MEDICAL PROFESSIONAL TO CALL ME BACK FOR 4 DAYS!! No ma'am. I am in no mood.

So I have my 5th Doppler scan and my arm is blood clot free. The ultrasound tech gave me some sass about being worried about blood clots when I'm actively taking Coumadin. He hinted that I should just be more compliant with my doctor's orders. 

Honey, you do not know me. With my history of clots, I try not to mess with that. I was on blood thinners for my entire pregnancy and my placenta was still covered in clots. So what,  I have an ER bill now. It's better than throwing a blood clot at home in front of my 4 year old. He apparently had the same condescending comments for the ER doctor who quickly told him people with Antiphospholipid Syndrome and Lupus markers can still clot on blood thinners. Bless him. It made me feel better about going in. 

Thursday rolls around and I am at a loss. After school, we take Alice to the Livestock show. While there, my favorite nurse calls me. "Ummm, (the PA) said you were in the ER! What is going on!" 

So I tell her. I tell her everything. I end it with "and now I'm freaking out because there's a 10% chance this is something serious and I am the ONLY ONE concerned!!" She writes everything down and vows to make something happen. Bless. Her. Melissa is my favorite.

She starts harassing the surgeons office. She mentions that with everything going on, the PA will probably want to see me. Greeeeeaaaaaaat. 

Friday morning I FINALLY hear from the surgeon's office. It was the nurse asking for the phone number to my Hematologist office. Nope. I'm out.

I hear from Melissa who wants me to come in that day to meet with the PA. 

I pack Alice up again. (When I mention I need to go to the doctor, she now asks if it's my Boob Doctor. Probably this is my fault.) I go over the timeline with my PA and she does an exam. She mentions they have a Breast Specialist on site so I take her card for the referral. She also mentions my Hematologist is also an Oncologist that handles this kind of stuff. I know this. I just went a different direction! He doesn't usually give me breast exams so I went with my OB. And plus, he's a boy. 

But I should have started with him. And now I'm only going to them. They are Texas Oncology after all. Now I know I will get the information I need and it will all be in one place. Plus, they validate parking.

I sign the paperwork to get my results sent to my Hematologist. The PA called this morning to tell me that Dr. Foote would like to do a MRI before they just start cutting on me. This seems reasonable. So now I'm waiting for my MRI to be scheduled. 

And I still haven't heard from my original surgeon's office. 

I hope to have better answers soon.

Like, really, really soon.

Until next time.....

B is for.....

...Boob.

One dumb boob.

A little over a month ago, Alice spent some time under my right arm with her heavy head resting on my right boob. The next morning I woke up and it hurt. I noticed a line of swollen something in my right breast. I thought it was a muscle and tried not to sleep on my right side (which is how I ALWAYS sleep) and I tried not to exercise or upset it more. I even rubbed muscle cream on it to try to help alleviate the pain. 

I googled stuff. I didn't have any of the more usual symptoms of cancer. I worried it could be a blood clot but I'm on blood thinners and I stay therapeutic for the most part. In my world, if it's something not right - it's a blood clot. I questioned whether or not I needed to go to the doctor for it. I thought it was a muscle! Most of my medical charts are substantial - I don't want to have "sprained boob" added to any of them. Seriously. How lame would that be?!

But after a month, it was still there and the panic started to set in so I scheduled an appointment with my OB/GYN. 

I had to wait for over an hour to see her so by the time I get to the room, I'm a complete wreck. While the nurse is checking vitals my doctor comes in and asks why I'm there. I immediately start crying. The nurse said she would come back for the blood pressure. Spoiler alert - it didn't do any good to wait on that. My doctor does an exam and says it's not a muscle and that she's calling her Breast Surgeon to try to get me in that day. 

Enter COMPLETE FREAK MODE. SURGEON! TODAY!

They confirm that the other doctor can see me and they send me down to her floor. I'm sure they told me her name but I heard nothing but "7th floor" so I just walked around until I read something that said 'breast' on the door and went in. 

I picked up a new 'ologist' - Boobologist. Technically 'Surgeon' but 'ologists' are what I collect. New nurse, new vitals check. To say my blood pressure was within normal limits would be a lie. And so I also get orders to go back to my Cardiologist. 

The surgeon looks at things and feels around and orders a mammogram and an ultrasound. She thinks on a scale of 1-10, my Freak Mode level should be at a 1.5. I like her. She's quirky and straightforward and thorough. 

The next week I got to have a baseline mammogram, a diagnostic mammogram, and an ultrasound. And then I bought ice cream and more wine. 

This is my side rant about mammography machines. THEY ARE THE DUMBEST DESIGN EVER!! Seriously! There HAS to be a better way! Forget walls or Russia or other planets. THIS should be what's important!!! FIND A NEW WAY, WORLD!!!  I walked away with 2 sore boobs instead of 1.

Everything looks normal. They just look like boobs. Apparently I have extremely dense breasts. The Radiologist mentioned this several times. I'm not sure if I was supposed to respond with "thanks" or 'I'm sorry." 

While everything on the imaging tests look good, there is still something there so we're scheduling a surgical biopsy to be sure. There is only a 10% chance it is something troublesome. I wish she would have said 2% but we don't know each other that well yet. 

I'm hoping this is a just a really expensive way to find out my dense boobs are extra sensitive and I take longer to heal than others. We'll see.

So now I'm waiting on medication instructions from my Hematologist and the surgery schedule from my Boobologist. 

Ironically enough, my blood pressure was decent at today's Rheumatologist appointment! So either I've come to terms with things or my anti anxiety essential oil regimen is working today. Whichever, I'll take it! 

Fun side story. I had my follow up appointment yesterday and while I was in the waiting room, the news was on. They were doing a story on some HPD officers who were involved in a shooting. They were talking about how one of their daughters was flown down to be with him. She was escorted to the airport by Boston PD, flew free thanks to American Airlines, and picked up and escorted to her dad by HPD. Y'all. My eyes are filling and I'm looking EVERYWHERE for the stupid remote thinking, "SHHHHHHH!!!!!! They haven't checked my blood pressure yet!! I DO NOT NEED THESE EXTRA FEELINGS!!!" Cops and their kids - they get me every time. 

So now we wait. 

And this isn't meant to scare or incite sympathy. That's not my goal. This is just my outlet. My way of organizing my thoughts and remembering the details. My way to find the funny amidst the stress. 

I'm thankful I finally went in. I'm thankful Dr. Miltenburg is being extremely thorough and hasn't diminished my feelings or my thoughts. And I'm hopeful this will be over soon. 

Until next time......

PS: Never in a million years did I think I would be blogging about boobs. Yeesh. It's just so unladylike! ;)

Out with the Old, In with the New

2016 seemed like the longest year in the history of ever. 

We lost some weight!
My baby brother graduated COLLEGE!
My baby sister GOT MARRIED! 
My Beloved had a health scare. 
We watched Alice grow and learn. Everything she does is magic. Except maybe the fits or her dogged determination to get her way. But even that makes us kind of proud. 
We booked her 5th birthday trip to meet the Mouse. WE ARE SO EXCITED! 
We lost some people we loved. 
We lost some people we admired. 
We lost some people we grew up watching on screens and while we didn't know them personally, they still hurt. 
We watched the world seem to fall apart.
We lived through the WORST PRESIDENTIAL RACE EVER. 
We were disappointed with the state of affairs and 'people' in general.
The hate was disgusting. The indifference was disturbing.
Our hearts hurt for the hurting. 
We gained some weight. 
I was discouraged. And sad. And stressed. And scared.
Lots of doctor visits.
Money doesn't grow on trees. 
Adulting is hard. And lame. 
I didn't finish the certification program I feel like I've been working on for FOREVER.
I got a part-time job at a church as their Wedding Church Lady.
I booked a big wedding for 2018 and will get to help plan from start to finish. I AM SO EXCITED.

And I am hopeful. 

My 'word' for the new year is "FOCUS'. 

I have spent soooooo much of 2016 so very distracted. I want to spend this year more focused. 

Focused on house keeping.

Focused on finishing my program. (Seriously, Mamaw, pray for me! I NEED TO FINISH BEFORE MAY!) 

Focused on health.

Focused on happiness.

Focused on just being present for Alice. And my Beloved. And my loved ones. 

Focused on sharing on this little space a bit more. I know, I say that a lot. I miss the outlet, I miss the creativity, I need it.

Just focused. 

So, Goodbye, 2016 and all your drama and nonsense!! 

And, Hello, 2017, we're so happy to see you! We are hopeful that you will bring newness and peace and that we can remain friends. 

Real talk, though. We're not playing. 

Until next time.....

March Sadness

Let me tell you, I have high hopes for April because March SUCKED. 

Disclaimer - this post is going to be LONG and this post is going to be full of lots of girly TMI so, boys, skip down to the bottom. You've been warned. For reals. 

First - it rained THE ENTIRE MONTH. Like, every day. Poured. We were worried the sun had been stolen and that we would never be happy again. 

And the TMI starts now.....

I have had super screwy periods since being on the blood thinners and they come often, like more than one a month. My uterus hates me with a passion and it lets me know as often as it can. And this month started with the worst period I have ever had in my life. The. Worst. (see boys, I warned you!) It lasted two full weeks of nothing but the heaviest bleeding possible. I had to change clothes a few times a day for two full weeks - it was bad. And also completely embarrassing and MORTIFYING. I didn't want to leave the house. I cried a lot out of frustration. I looked in to black-market hysterectomies. 

I also had a ton of annual doctor appointments to tend to so not leaving the house wasn't an option. While at the Ophthalmologist, my graceful self hits the handle of a chair and leaves a MASSIVE bruise on my thigh. Go me. This was my testing day - I have to go in for testing twice a year for Glaucoma and to make sure my autoimmune meds aren't messing up my eyes. After the test, the technician says the doctor should be calling. I tell her I have an exam with her in a few weeks but she says "she'll probably be calling you anyway." Enter Freak Mode. Turns out I didn't need to worry, all the tests came back normal. So the fretting for two weeks was for nothing. Thanks. 

We had a wedding in the Austin area to attend mid month. I still wasn't sure if I should go - see TMI paragraph above and also two legs covered in bruises - but we went. Girly issues slowed down FINALLY and we had a nice time! I did have some lower back pain after our first night. I blamed this on a bad hotel bed and needing an hour with my masseuse bff Lzata. However, Monday morning at around 2am, I woke up in such pain in my left lower abdomen, I couldn't sit still. Nothing helped. No position alleviated the hurt. I finally woke Daniel up and told him I was going to the ER to rule out a kidney stone. For the record, I have NEVER had a kidney stone and as far as I know, there isn't any family history of it either. So in-spite of his concerns, I drove myself to the neighborhood ER. "What if it's just gas!? I don't want you to wake the baby for gas!" I get to the ER, they put me in the room, give me some meds and do a CT. The ER doc says ovarian cyst - I say kidney stone. Turns out we're both right. Again, go me. I do tell them I am on blood thinners and they take my INR. My therapeutic magic number is 2.0. My ER INR is 7.9. Oops. 

So my ER doctor calls my Hematologist and I get to ride in an ambulance to the hospital. None of this is on my bucket list. At least the paramedic thought I was a treat. He asked why I was going to the hospital for a kidney stone and I told him my INR was a little high. He flipped my chart and took the Lord's name in vain, "a little high!?" Yep - that's how I roll.

I'm admitted with a Coumadin overdose. Seriously. 

They run some tests, I have to pee into a strainer, and I get a good dose of Vitamin K to counteract the blood thinners.  Nobody knows why my INR is so high, however, it does explain the horrible period and the horrible bruising. And after a chat with my hematologist, I discover that my prescription was wrong. I usually take two 5mg pills daily only the last time I picked up my pills, they gave me 10mg but I didn't notice. I was taking twice the amount I needed. Yes, that would do it. (My doctor has since called to apologize for this mix up and assures me it's not my fault and she isn't going to fire me as a patient. Bless her.)

I am also treated to both an external and internal pelvic ultrasound. This after the pelvic exam I had in the ER. Fun times! The ultrasound shows I have passed one kidney stone but I have another one waiting in my kidney. Yay! It also shows the cyst isn't anything to worry about. I come home with meds and instructions and an invitation to meet with my new Urologist in about six months. I collect 'ologists' - it's like, my thing. 

I come home late Tuesday night. Monday was Travis's 21st birthday. We had big plans. We were going to go out to the Rodeo and he was going to buy me a drink. This after I turned in my research paper I had ready a week and a half early but would now be late. Why do I even make plans!? Wednesday, I take Alice - who is on Spring Break - up to the school so I can turn in my paper. Thursday, we head to Nana's, however, halfway there I start to feel bad.The pain gets so bad, Travis has to drive me to CVS to pick up my meds and then home while Nana watches Alice.

I am thankful for my first kidney stone - it brought me to the ER before I unknowingly bled out from a blood thinner overdose. However, the second kidney stone seems a little unnecessary if I'm being honest. Uncalled for, if you will. One got my attention - two was just rude. 

Now I get to see my Hematologist weekly until my numbers are back to normal. With my INR being so low, I get extra worried about blood clots. My leg hurts and I panic. Blood clots terrify me. I had my yearly well-woman scheduled for last week (third pelvic exam this month - I should get an award or more wine) and I had to go over all the stuff that happened the week before. I had a complete meltdown in the office. I don't know why this happens. Maybe it's all the pregnant women projecting their hormones on to me. Regardless, I cry almost every time I'm there. Every. Time. One day, they might medicate me. She tells me my leg looks a little poofy and I sob the entire way home.

It's a clot. I just know it.

I call my hematology office and let the nurse know I'm freaking out. She tells the doctor, I get to visit with her again. She ordered an ultrasound and we spent ALL DAY at the hospital waiting for it. It came back clean. Thankfully. 

We closed out this glorious month with this weekend where Alice all of a sudden out of nowhere spikes a 102.9 fever while we're visiting Papa and Mawmaw. She got to skip school yesterday just to be on the safe side. 

We did have some nice times. My Beloved and I had spring break together so we got to have some day dates! And the road trip with the family was fun. 

But I'm real happy to see it over. I ended the month the way I started, with cramps. See, the uterus, it hates me. I'm hoping April is better; hopefully without the showers though. March rained enough! 

Fingers crossed we're looking towards the light.

Until next time......

Tiny

A tiny, crocheted teddy bear. My Beloved's Granny made this and it's so cute! It lives out of her reach for now. It's small enough to be a choking hazard. ;)

Today Little Bitty and I went to the doctor. While I was 99% sure she just has a cold, I wanted to be sure her ears looked clear before the weekend. This was our first trip to the doctor for something other than the well-baby visits. 

That makes me pretty proud! Her first illness was 14 months in - that's great! I like her doctors office. We don't always see the same doctors but there hasn't been one we haven't liked. And they are also so very impressed with how well she's doing. She's always done so well I forget there are some preemie babies that struggle some. The doctor said it made her day to see how well she's doing. And it made my day for her to say that. 

There is not one person in my life that will tell me I'm not a good mom no matter how many times I say I am. And yet I still doubt. They HAVE to say things like that! So sometimes when a doctor who doesn't have to love me says I'm doing a good job - I listen better. It's silliness, I know.

She is sounding better and she's sleeping and eating better. I think she's on the mend!

However, I think now the Momma might have it. Yuck.

Until next time....