It’s not going to be easy every time you try

I learned today that it’s not going to be easy every time you try to run. Today, I FORCED myself to get out of bed and go for a run, headache and all. It was awful. I hated every minute of it. Typically, I am psyched to go, and even if I am not once I start running and the endorphins kick in I am a happy girl. Today, that didn’t happen. Every quarter of a mile was a struggle. I convinced myself that I could turn around before I had even run a mile – with the fear that I would need to run to the bathroom if I didn’t! (This happened the last time I ran and I was afraid I wouldn’t make it home in time to reach the bathroom! What a horrible feeling!) My total distance was just over a mile and a half – and I walked at least a half mile of it. I felt defeated, and I considered deferring my half marathon registration to 2015. I know that today was an off day, and I just need to get back in the routine. 

Still, today I felt like the 300+ pound girl who couldn’t walk down the hallway without her head pounding. My head was pounding, but I was running, and that should be the victory. I have awful fears that the IH (Intracranial Hypertension) is creeping back up on me.

I have had a headache on and off for the last week. Most mornings I wake up with it but it goes away by the afternoon. With IH, it NEVER goes away. It is accompanied by buzzing in the ears, and a throbbing head with movement. I haven’t had these specific recurring symptoms since before I had my surgery, but if they happen to sporadically pop up it sends me into a panic. Yesterday, I had some buzzing, and today I had the pounding. Hence, the freakout and negative self talk that allowed me to stop running.

Tomorrow is a new day, tomorrow will be a better day. Tomorrow, I am hoping to LOVE my run, and myself. On a positive note, I have almost hit 10,000 steps today on my Fitbit due to the run this morning – no matter how crappy it was, it still counts for something!

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Use as Directed

I thought it would be fun to have a list of all of my current medications and what they are supposed to be treating so that I can cross them off my list once I am well on my path to being the healthy person I am meant to be.

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1. Diamox (Acetezolamide) – I take one in morning and one at night for brain pressure due to the Intracranial Hypertension (IH).

2. Zoloft – One in the evening for anxiety. I developed anxiety after my back surgery, I think it was due to the levels of chronic pain I had been experiencing for so long.

3. Tirosint – One in the morning. I take this gel capsule of thyroid stimulating hormone for my Hypothyroidism and Hashimotos.

4. Omeprazole – I take one at night for liver and gallbladder related pain.

5. Victoza – One injection nightly to treat/control Type II Diabetes.

Medications I take as needed

6. Fioricet – Pain killer for brain pain (pressure headaches) related to IH.

7. Vicodin – For severe back pain episodes.

8. Flexoril – For severe back pain/muscle strain episodes.

9. Naproxen – For pain due to cramping and heavy bleeding due to PCOS.

I THINK that’s it. I’m sure there’s something else. I can’t wait to get off all of this medication.

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Carrying The Weight of my Health on my Shoulders

After my Intracranial Hypertension (IH) diagnosis, I was cruising along with the adjustments of adding Diamox and it’s lovely side effects into my life. Things were going somewhat normal, my back pain was improving, and physical therapy was complete. One night in June, I had pizza for dinner, and woke up in the middle of the night nauseated and in a ton of pain (abdominal). I tried to take a vicodin to relieve the pain, and I tried a bath. The pain continued to worsen over a couple of hours so Mr. Lucky took me to the ER.

While in the ER, they told me that my liver enzymes were ALL off, indicating something was going on, and my CT scans and ultrasound showed fatty liver, but no kidney stones, or gallstones that were visible. They sent me home strongly emphasizing that I needed to be tested for Hepatitis based on my liver counts. (Which all ended up negative)

I followed up with a GI doctor, who recommended an Endoscopy. He mentioned that the Diamox could cause increased liver enzymes/chronic liver failure (yep – that’s right now I am 28 with a chronic liver failure diagnosis too!). The Endoscopy came back completely normal and the doctor suggested it indicates more of a gallbladder problem. I was instructed to schedule a HIDA scan as part of my post-operative instructions. (Which I still haven’t done – I’ve been dragging my feet because it’s a pain in the butt!)

During the ER visit, it was also discovered that I had some pretty severe anemia, so Dr. Wonderful told me to take Iron supplements. I took them, and burped them up a million times per day. My iron levels still weren’t improving because I was still bleeding heavily. (When am I not? The times I am not bleeding = probably 6 weeks out of a year total, and I rarely get more than one week solid without it) So she then referred me to a hematologist for iron infusions.

So I began my quest at the local cancer specialist who does the iron infusions, and started with them once a week on Fridays. I was not permitted to drive because apparently there is a chance of allergic reaction to the medication so they pump an IV full of Benadryl first. The first infusion was uneventful (other than being a hard stick for ANY bloodwork or IV’s). I slept through most of it, and noted that I needed to bring a blanket next time because the room was cold. The nurses were very nice, and the patients were too. There were many tv’s on in the room to help pass the time. I was there approximately 3 hours for each infusion. The Benadryl made me so groggy I would often sleep the entire day away which made it difficult to care for Lucky Charm. Thankfully, my sister and Mr. Lucky were around to help pick up the slack on these days. I went for infusions for 6 weeks. At the end my iron levels were one number below the low end of “normal” but they said it should continue to go up over time because of the infusions.

Eight weeks later, I went in for a re-check, and they are low again. The nurse practitioner tells me we need to really buckle down and get to the bottom of the root cause (my bleeding) and that a hysterectomy would be necessary to alleviate this and the anemia. I told her it wasn’t that easy, but I was frustrated with all doctors at the time. How can I just go get body parts removed when there is no good explanation for why this is all happening, and how they all have some relation to one another. Where do you start first?

This led me to the discussions with Dr. Wonderful about weight loss surgery.

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The Downward Spiral

Following surgery, I had a hard time healing. I had a hematoma (a pocket of fluid that was captured during surgery) that burst leaving me with a seeping wound for weeks.

I also started my lovely cycle the day after surgery.

Just three months later, I got a cold. I thought it was any old normal cold. After the cold went away, I had headaches that wouldn’t quit. These headaches were not relieved by ibuprofen, naproxen, acetaminophen, excedrin or the like. I had these headaches every single day, and my head would pound when I would walk down the hall. It would pound when I would sit, it would pound when I tried to rest. I had this extremely weird sensation in my hears of the pounding from my head.

After two and a half weeks of battling these headaches, I made an appointment with a doctor in my practice. (Enter Dr. Wonderful). I insisted to her that I had a sinus infection and possibly an ear infection causing these headaches. She examined me, and calmly told me that she did not see any evidence of any infection. She was, however, concerned about a brain tumor. She was writing me a script to get an MRI of the brain immediately. She also gave me a shot to attempt to relieve some of the pain (it didn’t). She also referred me to a neurologist. While I was waiting to see the neurologist, I decided to make an appointment with an ENT who could check my ears thoroughly and prove that this was all a misunderstanding. At this appointment, he said there was nothing wrong with my ears, but he believed my headaches and ear issues were caused by a condition called pseudotumor cerebri – he explained that it was more common in overweight females and caused tinnitus in the ears where you could hear your heart beat – which described the sensation I had been feeling. He told me to follow-up with the neurologist and to see him in a couple of months if nothing came along and I was still struggling.

When I left his office, I googled the heck out of this “condition” he suggested. It couldn’t possibly be this condition, because one of the trademark symptoms includes vision problems, and my vision was fine.

To be continued…

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