chronic illness

My Hospital Saga

As hard as it is to believe, my sweet Abby turned 3 on Friday! It feels like I no longer have a baby but a little girl instead! This weekend was supposed to be a weekend of family fun and celebration and it was for the most part therefore there will be a separate post for all of that! The not-so-good part of the weekend hit last night.

We spent our afternoon at the Merry-Go-Round Festival at our local park. We had so much fun! I did quite a bit of walking so I was prepared for the possibility of a flare as a result. Around 7pm, the pain definitely started to escalate but it wasn’t the type of pain I was expecting. I was prepared for more joint/muscular pain instead of the intense cramping, stabbing pain. I had to call John home from a local concert he was attending as I was starting to dry heave.

He took over giving Abby her bath while I took my pain medication and tried to lay down. The pain got so intense that I knew by 9:30 that I needed to go to the ER. John started packing Abby a bag to head over to church friends who are practically family. While he packed, I wrote down a list of all my prescribed medications and threw on some sweatpants.

We were taken back to a room at the ER around 10pm. The pain was if someone was stabbing me on my left side where my ovary would be and then cutting straight across. My body just have tensed up from the pain enough to cause a migraine. First thing the nurse did was to take blood and prepare an IV. I was thanking my lucky stars when she was able to get my vein first try (although it took her a few minutes to find one).

So we waited.

And waited.

And waited.

Finally the doctor came in around midnight. He was a major hottie. Me-ow! Definitely a perk of the visit. My husband just rolled his eyes at me.

They had gotten the first round of test results back and he diagnosed me with pancreatitis. He was a little puzzled that the location of my pain wasn’t centered near my pancreas but more lower ab/pelvic but he felt sure of the diagnosis and felt the ab/pelvic pain was the result of chronic pain due to my history with endo.

Following the diagnosis, they finally gave me some pain medicine through my IV so immediately my pain levels began to drop. The only setback was it made me itch something awful. The first round of benedryl didn’t work so I ended up with a shot in my butt which thankfully took it away.

At 2:40am, we were finally able to head home with orders to contact my doctor first thing Monday morning and a presciption for a different type of pain medicine to get me through until then. I questioned the staff to be sure that it would be allowed being a pain clinic patient (which has a different set of rules) but being a Saturday and in the middle of the night, they said it would be fine. Considering we had been there almost 5 hours, I didn’t question as we were beyond exhausted. I am pretty sure we were both asleep within 2 minutes of our heads hitting our pillows!

Pain had returned this morning so I took the one pill they had sent home with me and John took my prescription to the pharmacy to get filled. Then we got the call. Because I’m a patient at the pain clinic, the pharmacy was required to call the ER for further clarification and for approval to fill but the new ER doctor on duty would not authorize the prescription so it had to be shredded. Talk about frustrating. I understand in theory why the system is the way it is but it didn’t make it any easier.

Until tomorrow at 8am, I will be striving to just make due until one of my doctors’ offices opens and my soap opera ER sage can continue.

Hospital soap opera saga

chronic illness

Shifting Gears

Within the next month I will have four doctors appointments if you include the trip to my rheumatologist on Tuesday and if they are all as productive has Tuesday, I will be thrilled.

When I first left my rheum appointment, I cried as I once again felt like we were grasping at straws hoping for anything that might help how I was feeling.  Thankfully for the drive home, it was just me, my thoughts, and God. It was as if God was whispering in my ear to look at the bigger picture and see the positive. Once I did, I was able to see hope for the days ahead (its amazing what happens when you listen!).

The appointment started off like usual going over medications, symptoms, etc. We decided my current treatment was not working so we had some decisions to make and that’s when it happened. He asked me what options I would like to see happen. I was invited to become an active participant in my health care and if you score frequent flyer miles in doctors’ offices like I do you know that is a great thing.

We had always grouped any pain issues with fibromyalgia but had never been able to get a hand on it so I asked if we could back up and start over. I had felt like we were missing something and even though I had bloodwork done not long ago, I asked the possibility of testing a false negative (especially since I am that way with Celiac). He said it was completely possible so we started looking for other options. The joint pain the last two weeks has been pretty bad with Sunday being the worst I’ve felt in a long time joint-wise. I have started to notice some redness and swelling with some of my joints. He did an exam and he felt some swelling of the joints of my hands but not enough to make a definitely diagnosis but enough to keep an eye on.

So the new treatment plan involves two new medications – one to help with the muscle aches and pains of fibromylgia (with the added bonus of helping me sleep and possibly helping my gastroparesis) and the other is an anti-inflammatory to help the swelling and irritation of my joints.

Its only been a couple days but I am feeling really positive. I love the fact that I was able to be an active partner in deciding my health care. I felt that he not only was listening to what I was saying but that he also heard what I was saying. That is one of the best feelings in the world as a spoonie!

Now to hope my next three appointments go as well!


Being Infertile in a Fertile Family

Infertility & Family Relationships
Growing up the thought of never being able to have children or that I would struggle with infertility never crossed my mind. Aunt Flo decided to her monthly visits the month before starting eighth grade. My cycles were like clockwork and I could have easily marked a calendar. The only time there was a missed cycle was during my heavy long distance training my senior year which was not a surprise because of the mileage I was logging. So, if you had asked the 17 year old me that I would have issues getting pregnant, I would have laughed.

You see, I come from a fertile family. My cousins seemed to have no problem at all getting pregnant (and continuing to get pregnant multiple times). My mom didn’t have any trouble getting pregnant so my genetics were ok, right? Even when I was diagnosed with endometriosis, I didn’t want count myself out because 70% of women with endo are able to get pregnant (sometimes with the help of fertility treatments) so my logical self found the statistics to be in our favor.

So when the decision was made to try to make our family grow to three, we were feeling positive. I had an understanding that maybe we wouldn’t get lucky on the first try but that was ok. We knew our time would come and it would be our turn to make a baby announcement that so many of my family members had made.

When  you start trying to conceive (TTC) begin to plan your time in 28 day increments, the calendar can move slowly. We had to change it up a bit as some cycles were 35 days, some were 60, so it seemed we were in a perpetual state of “what if.”

Time clicked by and knowing my pain from endometriosis would creep up not being on birth control, we decided to step up the game by tracking my cycles.  Every day began by checking my basal body temperature and entering it in  onto my fertility calendar. This calendar also dictated when we should be intimate. Surely with all that knowledge, I would be able to get pregnant right?

Months ticked pass. Soon it was six months. Then right in time for my 25th birthday, we were branded. INFERTILE.

I cried as John and I sat in my doctor’s office making decisions about what to try next. Trying to get pregnant became a roller coaster of emotions. We would start every cycle hopeful as we would be using a treatment/medications to increase the chances of getting pregnant. Midcycle we would be anxious about the multiple numbers (follicles, lining, etc) and what they meant for us. Then the next two weeks we waited with baited breath on what the verdict would be. I would over-analyze every feeling and emotion wondering if it meant I was pregnant. A small fortune was spent on ovulation and pregnancy tests. Then the day came – NOT PREGNANT.

This went on for three years. I am typically a fan of roller coasters but this was one that I would have liked to get off. We cried. We searched for answers. We wondered why we were infertile when no one else in our family was. Had we done something wrong? Everyone in our families could have kids so why couldn’t we?

It was hard to be surrounded with babies and pregnancy announcements in the three years that we waited. My struggle with infertility became very lonely. The “just relax” and “your time will come” comments which were once  meant as comfort became words of hurt. We felt isolated as it seemed like everyone but us was able to get pregnant or others had gotten to a point where they didn’t know anything else to say.

Becoming a parent through the miracle of adoption has been a tremendous blessing. Words cannot describe how much I love my daughter and words cannot express the gratitude I have for her birth family who gave us the honor of being her parents.

However, it does not erase the scars left behind by infertility. In my case, I have a very literal and visible scar from my infertility. There are the still the questions of what it would have been like had we been able to get pregnant. Its not the same as saying we would have rather have a different family that didn’t not include adoption so don’t read it wrong. Those questions include what it would have been like to see pregnant on a pregnancy test or seeing the heartbeat on an ultrasound for the first time or feeling the baby moving. These are the experiences that we grieve. We would not trade our family for anything but please do not forget what we have had to go through to get here.

This week is the National Infertility  Awareness Week. Please check out more about NIAW week at!