Humira Approved!

The title pretty much says it all–my insurance company has approved my request for Humira! It’s only going to cost me $5 and Humira will pay my deductible so ALL my medications will be cheaper!

Yesterday was rough. I was house-bound with BG all day, and the only way I could keep from running to the toilet was to lay on my couch with my feet up. I felt bad for not playing with BG and letting her watch cartoons all day while I was on my cell phone researching, but mostly trying to distract myself from the waves of cramps and pain from my toileting. I’m quite sure that the fact that I was ovulating yesterday played a huge roll in my increase in symptoms. Oh the irony–I am finally mentally/emotionally ready to become pregnant again, but my UC is preventing me from trying. I’m a little bitter.

Months ago I had purchased tickets to see Daniel Tiger–paid almost $300 for front row seats–and the performance was last night. I was not sure I’d be able make it, and that was stressing me out. My BG is completely obsessed with Daniel Tiger and I was dying to see her face when she spotted him on stage, live and in color.

Luckily, my last dose of Prednisone/Vicodin/Bentyl worked (it f*cked me up, but it worked) and I was able to get myself dressed and put on a bit of make-up while Mr. MLACS fed BG dinner and gathered our things (snacks–when you have a toddler you have to be in possession of snacks at ALL times).

We arrived and Mr. MLACS went straight to the souvenir stand and purchased a Daniel Tiger hoodie and a poster for BG–good thing because they were going to sell out. We found our seats and could hardly believe how close we were to the stage. BG was completely awe-struck upon realizing that Daniel Tiger and friends were within arms reach! She sat on my lap and I bounced her and sang every word to every song. Sometimes she looked entranced but then she’d snap out of it, turning to me and Mr. MLACS, she’d smile and giggle with delight ❤

Afterwards, we got to meet-and-greet Daniel Tiger. My kid is a real “fan girl” and raged when we wouldn’t let her cut the line and rush up to him.

She slept in her DT hoodie and has worn it all day, even though it’s 80 degrees outside. I’m not arguing with her today but I forsee many battles re: the DT hoodie in the near future.

I can’t believe I made it without having to go to the bathroom until we arrived home–a real miracle. I even managed to retain my enema for several hours after I went to bed (which has been impossible lately, but it really helps).

But I woke up at 5am this morning  doubled over with cramps and hobbling to the cabinet to get my pills. Luckily BG slept in until 8am, and by that time I was functioning and had her breakfast ready for her.

I’m not so sure about Apriso. At the beginning of this flare I switched from Pentasa to Apriso, and I think some of my symptoms are worse because of it. The Apriso is targeted to the lower colon (proctosigmoid) where I show inflammation (confirmed by 4 colonoscopies). But I’m having painful gas and bloating much higher up. So then, maybe I need a medication that covers the whole colon in order to keep the disease in-check.

So I called my GI nurse and she called me back on my way to take BG to a playdate at the park. GI Nurse was annoyed that I had called and clearly did not want to discuss anything with me. She actually said “I have a hundred patients and I can’t talk to you every day”. I get it, but I was still offended. I told her the truth, “My last GI nurse wanted me to check in with her all the time, at every step. But I get that this situation is different. That’s fine.” Then she backtracked and was like “Oh you can always call me if you have a question or need something”, which is redundant because WHY the f*ck else would I call her?! We’re not friends.

I told her I don’t like calling and I’d rather just email her anyway, that way she can get back to me at her convenience and I’m not waiting for the phone to ring–my last (awesome, magnificent, rainbow-unicorn) GI nurse and I emailed constantly. The current GI nurse sounded relieved and said I should use my patient portal account (which I had not received an invitation to). Why didn’t SHE think of that *before* lecturing me about calling?! I’m not impressed.

Then about an hour later she messaged me through the patient portal that my Humira was approved! Woohoo!

I called my insurance and they said they are just waiting on a prescription from my doctor, and said it would be quicker if it was called in as opposed to faxing it. I messaged GI nurse to thank her for her time and attention and to pass along the number she could call the script into.

If GI nurse sends my prescription today, then my hope is that I can receive it tomorrow (rush delivery) and have the Humira nurse come and administer my loading dose on Friday.

F*ck I hope this works.

If I end up needing a colectomy, the best surgeons are at least 5 hours drive, but there’s some good ones 1.5hr drive. I’m already researching surgeons. I want to be prepared.

XOXO,

MLACS

ER Twice In One Week

20170129_133616Both times it was to get STAT labs done, with negative results. I don’t regret going to the ER twice this week, but I am frustrated that I spent time and money only to find that I’m having an acute UC flare (of which I was already aware).

After I wrote about being super f*ing sick on Thursday, I felt strange and weak. So I decided to go to the ER to be checked for anemia, as I had been bleeding a lot and my GI nurse had suggested I go to the ER on Monday. So I went, they drew blood, poked me, started an IV and gave me fluids, and I was quite surprised that they gave me Morphine for the pain. I am not anemic. At all. In fact my Hemoglobin was 14.3, which is high/normal. WTF? How can this be when I’m bleeding so much? So I was released.

I decided to take 60mg of Prednisone and it has been helping–particularly my morning dose of 40mg (the 20mg evening dose is not as effective). Going to the bathroom less frequently and having less pain throughout the day. I have also put myself on a liquid diet, which sucks. I haven’t eaten solid food since Wednesday. Instead I drink apple juice mixed with pedialyte, water, and a cup or two of hot cocoa. Luckily the Prednisone curbs my appetite and gives me energy, so I’m not dragging too badly from not eating.

But I am hungry. And I am tired.

BG woke me up at 4am this morning and I couldn’t get back to sleep. I had posted on an IBD forum and one of the people who responded said I need to be checked for C.diff. At first I blew it off, but then I realized my recent symptoms have been very atypical for me. All this watery diarrhea, blood, and cramping. And I had just been on antibiotics for my vaginal tear, while also taking steroids–this often leads to a C.diff infection. I also know that taking steroids while infected with C.diff is THE worst thing you can do, so I decided I have to be checked at the ER today, because otherwise I couldn’t have the test until tomorrow and it would take days to receive results.

So here I am.

In the ER.

Again.

My C.diff test was negative. Which is good. I’ve received a full bag of IV fluids, which is also good because I’m losing a lot of fluids. The nurse just gave me a shot of some anti-spasmodic in my butt. That hurt. But if it keeps me from having debilitating cramps and running to the bathroom then I’m all for it.

The ER Nurse says I’ll be out of here in 15 minutes.

The Humira Nurse came to my house on Friday to talk about how it works. I need to talk to my GI Nurse tomorrow morning and see if my insurance has approved the Humira. I’m hoping to get approved, have the medicine shipped, and have the Humira Nurse come to my house and help me administer my “loading dose” this week. Might be wishful thinking to get it started this week. But fingers crossed.

And then, pray that it works.

XOXO,

MLACS

 

Close Call (sick as f*ck)

BG woke me up this morning at 5am, and I could feel it–the war inside of my body.

I was uncomfortable, my guts churning, cramping, with the building urge to defecate. I felt dread. BG wanted to nurse and snuggle (per usual) and I just wanted to get her settled back to sleep before bolting to the bathroom. I lay there, fighting the urge, for 20 or 30 minutes. BG was just on the cusp between sleep and awake, and I knew if I moved that she would startle and cry when she realized I was gone. But I couldn’t hold it any longer. I ran to Mr. MLACS’s room (he sleeps in the guest room since I cosleep with BG) and I told him “I’m sick, go lay with her” as I rushed into the guest bathroom. I heard her crying and I began to cry too…silent tears, muffled sobs.

Immediately the toilet bowl was crimson with blood.

I couldn’t stop bearing down–it was like a contraction. Waves of contractions that I was trying to breath through. And the pain–the pain of my hemorrhoids and my swollen bloody anus, as I was bearing down under these waves of contractions–is excruciating.

The contractions finally slowed enough for me to get up from the toilet. But I felt no relief. I tried to sneak into the master bedroom because all my meds are in the master bathroom, but BG was not asleep and she saw me creeping across the room. I felt defeated as I rummaged through my drawer and held the prescription bottles up to the nightlite to be sure I had the right ones. I popped 20mg of Prednisone and two Hycosamine tablets. BG sat up as I exited the bathroom and cried out to me. I told her and Mr. MLACS to go ahead and get up since she was awake and he needed to get ready for work.

I curled up in the fetal position on the couch and tried to look chipper as I said “Good morning baby” to BG. But it wasn’t long before I had to run to the bathroom again. More blood. I began to feel shaky and panicked, like things were not ok.

Again I exited the bathroom and sunk into the couch, curled into the fetal position. Mr. MLACS asked if he should go to work and I looked at him, exasperated, and said “Well you can’t just stay home every other day for me”. I felt ashamed. Pathetic. Desperate. But I tried to muster courage and hope, that the Prednisone and Hycosamine would soon bring me some relief and allow my to care for myself and my child.

He left for work and I had to run to the toilet again. More blood. So much blood. I was shaking. I knew I wasn’t ok. What do I do? Do I try slamming a couple more Prednisone (renegade without consulting my GI nurse)? Is it time to go to the emergency room? When do I surrender? What will happen if I do? What will happen if I don’t get help…

I decided to pull a Hail Mary and slammed 20mg more of Prednisone.

Time stood still as I waited to find out my fate.

Within 5 minutes I could feel my immune system “retreating” from battle. I could feel the bleeding stop. The pain subsided. The contractions stopped. And that’s when I realized how close I had come to being hospitalized. To needing a blood transfusion. To NOT being ok.

I’m so grateful that the prednisone worked. And I kick myself because I KNEW 20mg wasn’t enough in the first place. I knew I should’ve dropped the Uceris and replaced it with 20mg of Prednisone. I just didn’t want to argue with my nurse.

I’m upping my Prednisone to the max dose of 60mg/day. I’ll take 40mg in the morning and 20mg in the evening. My nurse is out of the office until Monday and by then I’ll know if it worked, and if it worked and she’s pissed I didn’t follow directions then she can kiss my ass. The Humira isn’t even approved by my insurance yet (and obviously since my nurse is gone until Monday nothing will happen before then). Plus I doubt Humira would put me in remission if Prednisone can’t, since Remicaid didn’t work for me. I need to be under control before I start it.

I don’t care about the weight gain, the insomnia, depression, moon face, and all the other sh*tty things that come along with Prednisone. I just want to stay out of the hospital. I just want Mr. MLACS to go to work. I just want to take my kid to the Little Gym for her class in an hour. I just want to fix dinner for my family. I just want to live my life OFF OF THE TOILET.

XOXO,

MLACS

 

Cautiously Optimistic

I’ll just start with the good news–my GI nurse said, quote “I have never had a patient pay more than $5 copay for Humira”. I was like “Come again? My insurance told me I’d have to pay the deductible and then Humira would help me out. My deductible is nearly $3000.” GI nurse shook her head “STOP making calls and let ME handle it. Trust me.”

I f*ckin’ hugged her.

The Prednisone is helping. I’m still having symptoms, but going to the bathroom much less frequently and there’s less blood. I feel stronger. I told my nurse “It brought me back to life”. I was gray and withered yesterday, and now I feel more robust.

But it didn’t “shock” me into remission, as I’d hoped it would. And there’s a good chance I won’t achieve remission from Prednisone.

 

I had blood drawn at the office, to check for anemia, WBC’s, and other inflammation markers. I had to have it done twice because the doc didn’t order Quantiferon Gold or Hepatitis B blood tests, which I must have in order to move forward with Humira. No big deal, the phlebotomist was top notch. Then I talked to the GI nurse about Humira and she explained how things will work. The GI doc isn’t entirely sure we’ll use Humira because he thinks the Prednisone will do it. The nurse seemed to think I should get on Humira before I finish tapering off Prednisone, so that I stay in remission (assuming I achieve remission on Prednisone, which remains to be seen).

I don’t know what to think. I would rather not take biologics (Humira) because I’d rather not take them during pregnancy/breastfeeding (assuming I become pregnant, which remains to be seen, and I can’t TTC until this flare is under control). FTR, Humira has shown no ill effects when taken during pregnancy or breastfeeding. It’s considered as safe as any of the other stuff I take. But still. On the other hand, if it would improve the quality of my life (and by extension, my family’s life) then it’s worth a shot.

**I’m typing this from the toilet. My quality of life could most definitely improve.**

It looks like going forward with Humira is my best option. If I don’t achieve remission with Prednisone, it’s a no-brainer. If I do achieve remission with Prednisone, then it is still a good idea to begin Humira before I finish my taper, in order to maintain remission.

The doc wants me to start tapering off Prednisone after only a week (but keep the Uceris). I have my doubts. He also wanted me to cut it in half from 20mg to 10mg and then done in 2 weeks. I asked if I could do a slow taper and step down 5mg at a time–that works better for me. So I’m supposed to taper 20-15-10-5 and done in 4 weeks. He said he wanted to do a quick taper so I “don’t gain too much weight”. I like this doc but he always fat-shames me and I’m kind of incredulous. I’m 5’9″ and a size 12. I weigh a lot (close to 200lbs) but I’m well proportioned and I’m athletic (built like a brick sh*thouse). The doc is thin but all of his staff is out of shape and at least as “curvy” as I am. So are his patients. I have to wonder if he harrasses all of them about their weight? This is not the first time he’s mentioned it. I told him that I am VERY frustrated that I have not been able to consistently work out due to illness/injury/circumstances and that it is a priority. Also I know that Prednisone wastes muscle and encourages fat storage in the midsection, so I need to eat high protein/low carbs while on steroids to stave off weight gain. I can do it.

But not today m*therf*cker. Today we went to the Cheesecake Factory after the doctor and enjoyed ourselves. It was quiet, BG behaved, the food was great–awesome gluten-free options, and Mr. MLACS and I enjoyed sitting across from each other having a conversation in a restaurant in broad daylight.

All-in-all it was a swell day. I was treated very well and received good news at the GI appointment. Mr. MLACS and BG found a wonderful park and played while I had my appointment–they rarely have daddy/daughter dates since he is working so much, and they had a blast. We shared a great meal.

And the contractor came back with the estimate to repair our (burnt to a crisp) dream home–under budget. So we are getting ready to begin repairs and it is supposed to take 6 months. God willing, we will live in this house that we are paying the mortage on.

XOXO,

MLACS

Meeting The New OBGYN

I had my first appointment with my *potential* new OBGYN just before Christmas. I didn’t get a referral and I didn’t do a ton of research–I saw this doc’s bio and picture and my gut said he was “the one”. And I decided to trust my gut and wait 3 months for his first available new patient appointment.

As I drove to the office, I actually had to “tap” (EFT tapping) in the car, because I was already nervous and the Christmas traffic was *insane*.

Feeling discombobulated and overwhelmed, I was worried that I wouldn’t be able to articulate myself. How do I tell him the saga of “my life as a case study”, but without burying the lead (that I want to prepare to TTC)? Where do I begin? Will there be enough time at the appointment to get it all out? What am I forgetting? What if he HATES me because I’m such a neurotic pain in the ass?!! What if he just doesn’t get it, and I have to do this all over again with someone else??

I felt like I was on my way to some sort of high-stakes blind date… like… I felt like a contestant on “The Bachelor”… that sums it up.

Speaking of which, I felt really self conscious about my appearance–my hair (sort of styled), my outfit (leggings, t-shirt, oversized sweater and beat-up slip on tennis shoes), and of course–my *va-jay-jay*… I wished I had gotten waxed, but I made my best (still half assed) attempt to look presentable. I worried about my chipped and grown-out pedicure, but not enough to actually take the polish off and do my nails *or* find a pair of clean and matching socks in my mountain of unfolded laundry. I didn’t wear make-up to conceal my rosacea and by the time I got to the office my face was beet red. Yeah… all I can say is at least I didn’t smell bad.

I checked in and it didn’t take long–I brought a copy of ALL my medications and supplements (freaking 2 pages) so that was a time-saver. Side note: working in medical offices I noticed old peoples’ caretakers would always come prepared with a list of medications–I am a bit sour that I have to do this at the ripe old age of 37.

My appointment was for 2:50pm and I was required to be there 30 minutes early. Since the check-in didn’t take long, I had to wait awhile to be seen. I tried to stay calm but I could not shake my feelings of fear and anxiety. I was finally called back around 3pm.

The MA looked at my paperwork and then began asking me a ton of questions. I explained my autoimmune diseases to her as well as my medication list, and was satisfied that she knew what she was doing as she nodded her head and kept typing without pause (most MA’s would stop and look confused and need me to spell things for them). This MA seemed unphased–that boosted my confidence.

The main points I discussed with the MA were:

1. I have Ulcerative Colitis, Hypothyroidism, Rosacea, Lichen Sclerosus, and Depression

2. I have hormonal imbalances (too much testosterone, not enough progesterone)

3. I had 2 miscarriages

4. I used fertility treatments and conceived my living child upon my 6th IUI

5. I had a successful pregnancy and birth

6. During pregnancy I used progesterone supplements and heparin

7. I want to TTC again (so I need prescriptions for progesterone & heparin)

8. My Mother and maternal Grandmother both had breast cancer (my Mother died from it at 59) and I’m 37 so I think I need a mammogram?

9. I’m still breastfeeding

10. I want a bunch of blood tests including but not limited to: TSH, AMH, ANA, ALT/AST, and Prolactin

Since I recently switched insurances when Mr. MLACS switched jobs, I also decided to go ahead and have my annual exam (even though I just had one in May on my previous insurance) just to get that out of the way… but also to test out this OBGYN and see if he was gentle or if he gave me the creeps.

The MA said she was unsure if the doctor would talk to me prior to giving my exam or if he would do the exam first and talk afterwards, so she went to check. I was really hoping the doc would agree to talk to me first because I was in no way prepared to greet him half naked with my legs spread. In fact after the MA left the room I gave it some thought and decided I would insist on meeting the doctor first. But to my relief the MA informed me that the doctor wanted to speak to me prior to the exam. I exhaled. And I waited…and when I couldn’t sit any longer I began to pace the room…and I called Mr. MLACS to make sure he was going to be home on-time to relieve the babysitter since this was taking for-ev-er…and I looked out the 4th story window and watched people crossing the parking lot–many heavily pregnant women, women lugging baby carriers, women lugging baby carriers AND toddlers, and some much older women who were beyond childbearing age… and I let my mind wander, wondering what their stories were… until I heard a knock at the door and quickly turned around to see…

Him. The man I had been waiting (and waiting, and waiting) for.

He greeted me warmly and thanked me for waiting (as though I had a choice) and sat down. I didn’t waste any time and just blurted out “Something led me to you–I just moved here and I didn’t have a referral, I just knew you were it.” And that sounded odd, so I followed it up with “I was very close to my previous OBGYN that delivered my baby–he supported me through some hard times”. Which still sounded odd, so I said “Where are you from?” and he is basically a local. And I asked him “So what made you want to be an OBGYN?” And he replied that he prefers treating healthy people and prefers women over men, because men are difficult patients (he was being funny, I laughed) but I pointed out “But *I* am a sick person” and he said well ok sure, but I’m not dying nor am I infectious. I could see his point, although I think I expected him to say something about loving babies. Come to think of it, although Dr. Angel (my previous beloved OBGYN) does love babies, I think I remember him saying he chose to be an OBGYN because it’s so diverse–he gets to treat patients and perform surgeries, etc.

I digress…

So far I had observed that new doc had a warm smile, a cajun-southern accent, and a sense of humor. All good things in my book.

I don’t remember exactly how the conversation went, but points I discussed with him were basically reiterating what I told the MA. And I asked him some questions:

  1. My previous OBGYN managed my hypothyroid and depression (tested my TSH and gave me refills), would new doc do this? Or could he refer me to a PCP and/or an Endocrinologist?
  2. I definitely need progesterone (told him my numbers–which I have memorized). My insurance covers PIO or oral progesterone. I’ve used Endometrin and Crinone. What does he suggest I do? Will he give me a script today?
  3. Although I don’t have any known clotting disorders and only one red flag (elevated ANA’s) and 2 miscarriages, Dr. Angel had me do Heparin injections and I’d like to do them in any subsequent pregnancy. Ok?
  4. What if I need to see a fertility specialist? Which RE does he recommend?
  5. Since I’m over 35 and officially “AMA”, will he have me see the MFM?
  6. Do I need a mammogram?
  7. Who attends his patients’ labor and deliveries (if not him)?

His answers were:

  1. He’ll manage my hypothyroid/depression for now but he referred me to a PCP clinic closer to where I live and enthusiastically recommended a couple of docs.
  2. He suggested Crinone and said he’d send in a “test” prescription and if it was too costly he could make an appeal to my insurance.
  3. He said he definitely agrees I should use Heparin again–in fact one of his MFM’s uses it on anyone who has had more than one miscarriage because we can only test for *known* clotting disorders, and there are many other factors that can’t be tested. Basically he holds my mantra “An ounce of prevention is worth a pound of cure.” I was SO thrilled to hear this, as I was afraid he would say no.
  4. He said if I need an RE then he has a referral, no problem.
  5. Yes I will see the MFM
  6. They don’t do mammograms while a woman is breastfeeding unless they have a reason (like if I found a lump).
  7. His office is near the hospital and he tries like hell to attend his own patients–hence why I had to wait awhile, because he was delivering a baby. I told him since that is the case, I don’t mind waiting.

I also asked him a sensitive question… what are his thoughts on medical abortion? I am older and I have a higher risk of birth defects. New doc said that if it’s not compatible with life or would cause a very poor quality of life, then je will perform a medical abortion. But if it were something such as Down Syndrome, then he would feel the need to refer me to someone else–no judgement but that’s where his conscience draws the line. And he said it really pisses him off when women use abortion as a form of birth control and have several or more. I was completely satisfied, and even moved, by his genuine answers.

He then proceeded to *ask me* which blood tests I like to have ordered. I really appreciated that. And then he asked me if I had any more questions and waited patiently while I fumbled with my phone to make sure I had checked everything off my list.

And the physical exam was probably the easiest and most painless exam I’ve ever had.

He is THE one.

God and my guardian angels never steer me wrong.

New doc will henceforth be known as “Dr. Soul”. He is the soul of the South. And he is a kindred spirit to me.

No one can replace Dr. Angel, but Dr. Soul is going to take good care of me. I believe.

XOXO,

MLACS

2013 Can Suck It (Take 2)

I just wrote the longest, bitchiest post I could possibly imagine. And I published it. And then I decided to un-publish it, because it’s slightly funny but mostly just insanely bitchy and I’m not doing you any favors by sharing it with you. So, it’s gone. But it was basically talking about how crappy 2013 was, and that is worth mentioning so I’ll list the offences of 2013:

1. Miscarriage: Feb. 25th, 2013. It was not a “missed miscarriage”. The bleeding started but an ultrasound revealed an embryo that measured within a couple of days of anticipated conception, with a heartbeat of 160bpm, at 7w2d. Yet (after a visit to the ER that night confirmed no heartbeat), it was dismissed as a statistic by my OBGYN, I was given Misoprostol to ensure complete ‘evacuation’, and told to give it a month and try again. Then I went on to have a chemical pregnancy on August 2nd, 2013 (there was a sac and if FELT worse than my prior miscarriage).

2. Chronic Illness: Ulcerative Colitis has worsened 10 fold this year. Post-miscarriage it was revealed that I have several other problems, including:

  • Hypothyroid (may very well have caused my miscarriage)
  • Lichen Sclerosus (an autoimmune disorder that causes the skin in my genital area to atrophy–it’s painful)
  • Elevated ANA’s (anti-nuclear antibodies–an indicator of Lupus)
  • Elevated NK cells (natural killer cells, which play a delicate role in implantation)

3. Horrible doctors (totally unsupportive and incompetent–when I was most fragile post-miscarriage)

4. Marital issues I’ve written about some of it in the past–it’s not easy to have marital problems on top of all this other bullsh*t in a town where you don’t know very many people and you’re scared sh*tless that you might be really, really sick. Oh, and you’re blaming your body for killing your seemingly perfect embryo and feeling desperate to figure things out to protect future pregnancies, while your husband tells you that you’re overreacting and wasting money. Things are different now, but they really couldn’t have been much worse for awhile.

5. Moving But not knowing exactly when or where. Mr. MLACS hated, absolutely HATED his last project. And he thought he’d get promoted to an upcoming project (a domestic job), but that did not manifest–he got dealt a lot of sh*tty hands this year. We decided to “abandon ship” and started looking at other companies, but no one could give us a solid offer with the pay he should command. We had to make a lot of hard decisions and in the end he chose to stay with his company and do a job in Canada (commuting), and we moved back to my hometown. But this process began in April ’13 and we did not know where we were going until August, then we moved abruptly in September. STRESSFUL. And for most of the summer I just felt frozen–I was watching life moving on around me while my own life was suspended in wait.

6. Finances Just when we think everything is going to be fine, something pops up. It causes us to fight and it caused me a lot of anguish on top of the other stuff I was dealing with. Part of it is medical bills, which is a bitter pill to swallow–first you have a medical crisis, then you find yourself in debt over it, often with no resolution. And I didn’t work–I went back to school to become a nurse and most recently I’ve been obsessed and single-minded about having a baby (which is getting expensive as well).

After our (practically immaculate) first conception in January 2013, I couldn’t have predicted that I’d be sitting here–not only childless–but not even pregnant a year later. I don’t think anybody would’ve predicted this–my doctors kept patting me on the back and sending me home until a couple months ago when I met Dr. Angel and we started IUI’s with injectables. I couldn’t have predicted any of what happened this past year. I was in a strange city trying to transition into a new phase of my life (motherhood), trying to build my (difficult) relationship with my husband, trying to forge my way to a new career (nursing), and trying to figure out WTF was happening to me and how to deal with it– all while fighting chronic illness and multiple miscarriages. I don’t know what I expected, but I was not prepared for what happened. I’m still traumatized. And, in fact, I think that I have gotten worse recently (in no small part due to the IUI hormones)–I’m fighting feelings of anxiety, anger, depression, sadness, insecurity, indifference, irritability…I’m quick to anger and I have NO FILTER (hence why I 86’d my initial “2013 Can Suck It” post). I don’t know if 2014 is going to see the resolution of the above listed grievances that I have against 2013. I could really use something to look forward to, but I don’t have anything. Yet…

 

 

 

 

 

Merry Birthday Jesus!

I know I was all sad and stuff in my last post (like “oh I don’t feel like talking”, blah blah blah)  but I’m feeling more like myself again (for the moment–but this may be transient). I’m nearly ready for Christmas: house decorated (but still need to finish cleaning–I hate cleaning, so I might give myself a B- in cleanliness and organization but whatevs), cookies made (I chocolate-dipped oreos and pretzels and sprinkled different things on them, for example: white chocolate with crushed candy cane bits–making chocolate dipped stuff is a WAY bigger pain-in-the-ass than just baking something, IMHO), presents bought and wrapped (I $pent almost as much on the wrapping as I do on the damn presents), groceries bought for the carefully planned Christmas dinner (which, same as Thanksgiving I’ll be cooking, because of course nobody else is volunteering), and there’s one more thing…

OH! I’m missing an excuse/lie to tell my Mother-In-Law (MIL) to explain WHY I have to leave in the middle of making dinner–because I have to go see Dr. Angel for monitoring and of course the best time for him is between 3-4pm. Hello drama, my old friend, how ya doin’?! I’m a horrible liar. I have no idea what I’m going to tell her. But as you already know, I don’t want to tell her anything because, well, I just don’t want her asking about it and I most definitely do not want her to say anything to my (shady) SIL. Mr. MLACS is totally backing me up about not saying anything, although it will be awkward because at some point during MIL’s visit we are both going to have to “excuse ourselves” to go do IUI #2. We’re kind of just thinking of saying “we’ll be back in a couple hours” and leaving it at that–MIL won’t pry. But yeah, so that’s what’s up….

I had everything planned out for Christmas, but I didn’t plan to succumb to depression and anxiety for a week and fall behind on my preparations, because I didn’t plan for IUI #1 to fail and thus necessitate IUI #2 during Christmas. Yup, infertility is nothing if not inconvenient, right?

I saw some friends this past week and that was a wonderful pick-me-up, plus Mr. MLACS is home now for about a month and we are getting along, plus I’ve had some more acupuncture from Star, plus Dr. Angel is…well, he’s an Angel.

In other news, Doc Angel and I had a pow-wow today after my monitoring session. The day he took my betas (12dpo) my Progesterone was only 2, and we all know that is pitifully low, right? Right. I have 3 months supply of Endometrin (progesterone suppositories) so given that my progesterone was so low, Dr. Angel wants me to begin progesterone the day of IUI #2. I was really surprised my progesterone was low, because my boobs were huge and I was having crazy nightmares (which always happen when I’m pregnant or on progesterone supps). But, I’m oddly relieved because now maybe I can blame low progesterone and not sh*tty egg quality for my failed IUI #1, and there’s the ‘silver lining’.

Also, Doc Angel said my testosterone is totally normal (25) right smack in the middle of ‘normal’ range and my free testosterone was also normal, though I cannot remember the exact number for it. I was surprised, because (if you’ve read my ‘about’) then you know I have a lot of excess coarse androgen-promoted hair growth on face/stomach/thighs, which unfortunately does not go away just because I got my testosterone ‘in check’. I suppose this is what spironolactone is for, because it blocks the androgen receptors in your hair follicles to prevent the hair growth. But I’ll never take that crap.

I also spoke to my Gastroenterologist (GI) doc about postponing my next Remicade infusion for a few weeks in case it may be interfering with implantation. Surprisingly, my GI was totally for it and said he didn’t prefer to use it in pregnancy if I can avoid it, but to monitor my symptoms and let him know if I’m feeling bad. This means I have to diligently use my Rowasa enemas every. single. day. But who knows, maybe I will be able to get off of the Remicade indefinitely, and that…would be priceless.

I’ll talk more about IUI #2 later, but for now I’m gonna play these cards close to the vest. I’m using the same protocol as last time (Femara + Bravelle + Trigger + IUI) except with different dosages/days and adding progesterone supps. I hope you ladies all have a Merry Christmas and cheers to Jesus! XO

 

More Rain Before The Rainbow…

pink ribbon

Uh, hey guys…I, uh, well…*looking down, hands behind back, kicking dirt*

Fuck it.

My Mom was diagnosed with terminal Breast Cancer that had metastasized to her lungs at age 55 in 2006, and she passed away at age 59 in 2009. And now her Mom, my Maternal Grandmother, has been diagnosed with Breast Cancer this week at age 83.

I HATE CANCER. I FUCKING HATE CANCER. ESPECIALLY BREAST CANCER.

Both my Mother and Grandmother were cigarette smokers and both diagnosed after age 50, but Dr. Angel still thinks I should be tested for the BRCA gene. Regardless of the presence of the BRCA gene, I am still at higher risk of Breast Cancer given my family history.

But that is really far from my mind right now. My Grandma is my last living grandparent. We have a close relationship. She still lives with my Dad and helps my sister run our family daycare. Grandma and I stuck together during my Mom’s illness–I didn’t talk to my Dad for 2 years, though I have since forgiven him and seen a change in him that lets me know that he has been exorcised of his demons and won’t do me any more harm in his lifetime. My sister is a different story…we have a volatile relationship and she is bittersweet…sentimental one moment and heartless the next…probably the most fickle human being I’ve ever known. My Grandma stood by me during my Mother’s illness, while my Dad and Sister picked me apart as their grief manifested as rage. Grandma and I went to church and prayed for those assh*les to wisen up and stop being miserable and vomiting their misery onto everyone else. I really believe that praying for them to gain wisdom and compassion has manifested change in both of them, but I still don’t trust my sister–I’ve been screwed over too many times.

I wept to the social worker during my Mom’s illness. I was having a complete mental breakdown because I had had this vision of my family coming together and supporting each other and lifting my Mom up in her time of need…and what happened was a Jerry Springer episode gone horribly wrong. I was treated as an outsider, as I had been living in Hawaii for several years, and ultimately I became the target of all my Dad’s and my Sister’s anguish. The social worker said that terminal illness causes one of two outcomes in families: it either brings them together or tears them apart. And there’s nothing I could do, except try to support my Mom–and they made it VERY hard for me to do that. I had put all this behind me and moved on to have healthier relationships with my Dad and Sister, but I’m having PTSD now…my Grandma is going to die the same way as my Mother did in our family home…I can’t help but harken back to those dark days…and after 2013 has beaten me to a pulp with marriage difficulties, chronic illness + health crisis, 2 miscarriages, Infertility…I’m afraid that I don’t have the strength to endure going 10 rounds with my family if they decide to regress and act the way they did during my Mom’s illness…I’m literally sick to my stomach just thinking about it.

I am very active with Susan G. Komen for the Cure and I fundraise for a memorial team in my Mother’s memory. It’s cathartic for me, to feel that in some way I am fighting this disease that will ultimately claim the two most important women in my life. And when somebody asks me what they can do, all I can say is “fight for a cure“.

In other news, I’m currently in the midst of IUI #2. But I know you’ll forgive me if I don’t feel like talking about it. In fact, I don’t feel like talking at all. I love you guys, and I’ll be keeping up with you, but if I post and comment less consistently it’s not because I don’t care. It’s because I care too much. XO

**Edit**I’d like to add that I’m relieved to have my Mr. MLACS at home with me as of yesterday–I didn’t have him when I went through this ordeal with my Mom and he is a great source of comfort and stability for me. I’m still hopeful that I will be able to introduce my Grandma to our rainbow before she leaves this world. Also, I talked to my friend who’s dating Dr. Angel’s son (she intro’d me to Dr. Angel) and told her I was overwhelmed by anxiety and depression post IUI #1. So I’m sure it was no coincidence that Dr. Angel pulled me aside today after Mr. MLACS walked out of the office and said “I forgot to mention that the hormones can cause or amplify any issues like depression or anxiety, perhaps you’ve experienced some of this?” to which I replied “Oh. Well yes I have.” And Dr. Angel said “Well that’s normal and if you need to talk please come and see me.” He really is my Angel, this guy. My cat slept on my head last night and is currently cuddled next to my butt on the couch–he missed me for the 36 hours I was away, and I missed him too–he is definitely my baby. I know I sounded morose in the above paragraphs, and part of me is–but the better part of me is still optimistic and grateful. XOXO

It’s My Birfday!

Well, it was my birthday today (Dec 16th, I know that wordpress is going to post this as the 17th but here in the the USA, Central Standard Time, it’s still December 16th–my birthday).

I haven’t written in the last few days–because I’ve just felt inexplicably awful and I had nothing to say except “Help”. I had begun to wonder if I would ever feel good again. Everything made me cry–I would get a lump in my throat and just burst out in tears, and the tears would quickly fade but then I would be left feeling exhausted, confused, and unrelieved. Everybody seemed to hate me–I interpreted everyone’s actions/inactions in the worst possible way (example: my friend didn’t text me to confirm dinner plans in the afternoon on Saturday so I assumed he had found something better to do (because I am SUCH a boring loser) and then he texted me around 6pm and asked where we should go–I had agonized over nothing). I have been consumed by anxiety and depression in a way I haven’t been since I started medication 7 years ago. And I was SO stressed thinking “My depression and anxiety is going to RUIN all the potential of IUI #2”, but I couldn’t make it stop. This feeling of desperation about screwing up IUI #2 was the worst. It’s worse at night (dark, cold, lonely) and I found myself awake until 3am every. night. this. week. It didn’t seem to matter how many “warm fuzzy” Hallmark Christmas movies I watched, I couldn’t shake my misery.

Until Today. I stayed up late last night tidying my house because I wanted to wake up and not be irritated by all the stuff on my “to do” list that still wasn’t done and then having to look at my house in disarray. So I fixed everything before bed. And I woke up excited to go see my friend (the acupuncturist) Star to begin treatment this morning. I brought her a cute little treat bag of chocolate dipped oreos that I had sprinkled with crushed candy cane (as I’ve previously suggested (click here) it’s always good form to bring treats). I felt relaxed the moment I walked in the door and saw Star’s smiling face. Star took time to thoroughly go over my medical history, and then she began treatment with an interesting technique. I don’t know what it’s called, but she had me hold up my right arm in front of me, and she asked my body (not me, my body) a series of questions about what is bothering it (spleen? stomach? kidney?) and when my arm would ‘give’ when she pushed she would consider it an answer from my body–my body said my kidneys and stomach are weak/having issues. Then Star had me hold up my hand and asked my body if events in my life had caused my weaknesses, and at what age these occurred. My body replied that I had traumatic events at ages 12 and 22, which I can only assume were related to my very piss poor body image/disordered eating–at those ages I literally hated my body and wanted only to be thin, and not just thin but pin-thin (which is not even a possibility for me, I know, because I eventually did become very successful at my eating disorder and started under-eating/over-exercising and even at 10% body fat the smallest I got was a size 4/6). So, I told Star what had happened at those ages, and then she tapped down my spin and pushed those things out of my body–I felt a physical release. Next, I laid down on the table and Star placed the acupuncture needles at various points (not the first time I’ve had acu) and told me to relax and call for her if I needed her. The needle that was placed to detoxify my kidneys kept falling out–which intones that I am overwhelmed with impurities. Toward the end I could feel the toxins begin to release into my blood stream and I became quite uncomfortable. But when I sat up after the treatment, I KNEW that good things were happening–I knew I was in the right place and that Star was the right person to help me on my journey to a baby. I appreciated that she focused on my fertility too! She gave me suggestions for books and supplements, but without any pressure. I have smiled all day–genuinely smiled. And laughed. This huge tension/stress knot in my left shoulder has all but disappeared and she didn’t even touch it. I feel lighter and more energized. It’s ah-maz-ing. I just wish she took insurance! But she’s worth every penny.

I had a good rest of my day too, gluten-free pizza for dinner with my family and gluten-free cupcakes made for me by my sister. Lots of well-wishes and happy birthdays on facebook. And a lovely little card from one of my IF/RPL soul sisters, as well as a book of fertility philosophy from yet another IF/RPL soul sister arrived in the mail 🙂  I feel so loved and nurtured, like I was falling through the sky but I’ve now landed on a cloud. I feel like, no matter what happens with IUI #2, I think I will be ok (but I’ve only just begun the hormones so no promises).

I have to give a shout-out to Mr. MLACS as well, because he’s been a complete gem. While he can’t be here in the flesh to comfort me, he has made himself very accessible across the miles and has answered every phone call and listened patiently to every meltdown. He has not allowed me to worry about finances. He had a lovely orchid plant sent to surprise me the other day (I love Orchids)! He’s giddy about Christmas and has been shopping online and loads of boxes have been arriving from Amazon.com, mostly wrapped, mostly gifts for me. And my most favorite thing: it’s a birthday tradition for me to go to the Nutcracker ballet for my birthday, and he bought us tickets and we’re going to see a performance on Friday in the city (where I have to pick him up from the airport). I love having something to look forward to!

In closing…as I was cleaning/organizing my house today, I found a “rainbow maker” that my Dad gave me a couple months ago when we first moved here. I LOVE prisms, those crystals that project rainbows onto the wall, and the one my Dad gave me has a little solar panel that projects the light onto the prism…I hung it in my bedroom window. I sighed wistfully and hoped that this means I’ll be holding my rainbow this coming year. And I didn’t even cry. XO