Bad Luck & Bad Timing…

Since my rant on Sunday, I have been further blocked from the Crohn’s group on Facebook, to where I can no longer see them, so I have that going for me. (See Open Letter)

Monday I began the Topamax medication, and I can already sense a delay in my mind, where I am searching for the words or story but I go blank.

Like, blank blank.

I was walking through Sam’s club this week and I remembered something I was going to tell Philip numerous times already, but not two seconds later I forgot it.  I couldn’t remember what it was until later, turns out it was about something minor – a new bruise on my butt cheek, but for the life of me I could not remember it, and it had been driving me crazy that I kept forgetting it over and over.

forgot

At the doctors and at the dentist on Wednesday, I had a few brain lulls that made me feel like an idiot, so I’m not sure if I can blame my sleep quality or the Topamax for the blond moments.  (I can say that since I was born blond)

I have read that the Topamax can cause you to lose the ability to be a decent speller.  I like to think I am an exceptional speller, so that will be hard for me to handle if I suddenly find difficulty in it.  And I have even read that after stopping the drug that your mind never fully recovers…

If this medication doesn’t help my migraines or help slightly in a few months, I will definitely be pulling myself off of it to prevent these side effects, especially if they cause long-term problems in addition to postponing our baby making.

At the dermatologist this week, Dr. W looked at my skin and looked back in my file to December 10, 2014, when I first had biopsies done on my scalp and the inner side of my left leg. If you look back to my Crohn’s Journey, the biopsies showed ‘chronic folliculitis’. That seems like a lifetime ago.

Dr. W stated that since the body wash and creams I had been using hadn’t helped, and since the cream I had initially been given from the Cincinnati VA had not helped either, that we were going to try something new, to stop my skin from breaking out so often and so badly in certain areas; ie. behind my ears, shoulder blades, chest.

But lucky for Dr. W, I am allergic to penicillin and all of the other drugs he wanted to give me.  Turns out, I am allergic to Sulfa type drugs as well, something I didn’t know.

So, I had to sit in the little patient room while he researched different medications, to see which one I was actually allowed to take.

I have to mention, I cannot be 100% certain about this dermatologist, because when I arrived, he had what looked to be a nasty rash growing on his arm.

I mean, how far can you trust a dermatologist if his skin had its own issues a brewing?! I mentioned it to Philip and we had a good laugh about it at lunch after, but in reality, shouldn’t I be concerned?!?

I was prescribed Doxycycline and a Mupirocin cream that I am supposed to put in my nose for the Staph infection. Yes, IN my nose. The pharmacist was shocked, too, because it is commonly used before surgeries.

I am getting quite the personal pharmacy at home and that isn’t even all of my meds pictured.  (See This Week Was Canceled)

William Hicks (3)

The Doxycycline will kill whatever bacteria is in my body that is causing my issues, hopefully.

It can also help my Rosy-Red-Cheeks and Rosaceae, but I can’t be in the sun too long or go tanning.  I laughed out loud at the doctor when he told me that because I am as pale as can be.  Clearly, I am not sunbathing in my spare time.

But, this medicine may also cause birth defects, in addition to all the other fun side effects, if used during pregnancy or during conception from either sex.

So, that makes not one, but two medications I am supposed to use until November-ish that is causing us to postpone our fertility journey. (See Is All Hope Lost, Again?)

Oh, and Philip will probably have to be out of town training the week we were ‘planning’ to inseminate anyway, my ovulation week.

Go. Figure. How about that timing?!

It’s as if it is Me against the world, or my timing and luck are just no good.

The closer to September we get, the sadder I am about not doing the IUI. When I want something, I want it now. Not in a year. Not in 5.  Not in 10.

But to be real, I probably don’t have 10 years of TTC left, I’ll be 28 in 5 days.  Another fertile year gone.

The closer we get, the more we realize we need to look at the other, more expensive options, like ICSI and adoption, because the IUI would probably fail, given my luck, my stress, my issues. (Sperm donation may be a cheaper route to discuss as well, but it is not an option right now for personal reasoning.)

But to plan for either of those, we may as well plan to win the lottery next week. I’ll let you know how that goes next Friday…

At this rate, the finish line (uh, Baby in arms) is getting farther and farther into the distance, becoming that much more nonexistent with every month that passes, and we haven’t even started any meds to work on my Crohn’s issues yet. More meds I am sure that will postpone this journey even further.

I hope for a new medication for my Crohn’s in August, I’ve heard great things about Humira. We will have to be a little more adamant this appointment because my symptoms getting worse has been putting a stress on me, and then that stresses Philip, and then we stress each other.

It’s been stressful, to say the least.

So then, after the dermatologist appointment and a lunch date on Wednesday, Philip and I both had dentist appointments, but I had to have cavities and fillings done, where he did not.

I went into the appointment knowing the fillings were going to happen, but the dental tech said I didn’t have to have it done unless I wanted it, but I was already there, so why not get it done?

She numbed my jaw and I got sent back to another dentist to start the fillings, but the tech forgot to numb me fully because I could feel her clamping on my gums, scratching them, so we had to wait and numb me all over again.

I found the whole thing hilarious, and a much better experience without a migraine this time. I brought my migraine meds, sunglasses, and headphones, so that helped, and I may have even talked my dentist into her first tattoo!!

Side note: I really do love those AYL Bluetooth Earphones from Amazon. I love not having that cord to catch on everything and actually being able to walk away from my phone.

The dental dam I got to wear proved for a perfect selfie, though:

I feel like Mason Verger from Silence of The Lambs with my jaw exposed and all. Can you see the wet spot on my napkin bib? The dentist tried to waterboard me at one point. (Kidding.  She aimed the water directly at the back of my throat on accident. I think.)

The dentist talked to me the entire time and asked me questions! Good thing for her my phone has a built in stylus so I could write her little notes. It was quite humorous the system for conversation we had going.

This was the last maintenance appointment I have with the dentist unless I want to replace the silver fillings that I got in the Navy with the white ones.  I’m not sure if the silver tops bother me enough to spend the $300 on changing them over. I may get the Zoom Whitening treatment instead.

I will probably have to go back to the dentist this week for a quick fix, though, because that’s just how my luck goes.

My smile is now a little crooked since my visit, the teeth she filled are flat and it feels like something is permanently stuck in the tooth now.  Will that grind down in a few days?! I’ll call on Monday and see.

I say it all the time, but if it weren’t for bad luck, I’d have none at all, and that is the truth.

To help that ‘flat tooth’ and my never ending stomach battles, we have had easy dinners all week, like tuna, sandwiches and soups for me, some of them I keep down, some I don’t. Our dinners have changed significantly because everything hurts!?!

I even had to cook dinner in the dark with my sunglasses on because of a migraine this week. I was looking forward to the meal, but forcing myself to get up and make it was painful. The struggle is real.

I tried out a TensUnit this week.  It is a Transcutaneous Electrical Nerve Stimulation device, that uses an electric current to help the pain. I found bowel disease and back pain placements on Pinterest and I got one for free, so I’ve been giving that a shot. If it helps, why not?!

Note to self: Do Not Touch while On.

I tried to move it while it was on and shocked myself. It was more startling than anything, but it does give me flashback memories of touching an electric fence as a kid. It would make a great wake-up device, so if I ever need a good shock, or if the hubs needed one, I’ll know what to do!

And that brings us to today.

What I really look like versus what I show the outside world.

The photo on the left was taken this morning after some ugly crying. I was and I am not feeling well. My body hurts. My mind hurts.

And the photo on the right was taken on Wednesday (2days prior, notice the outfit) at the dentist.

Thank you to those who complimented my ugly!

The days I actually get up and move are the days I shamelessly share all of my selfies, because I only look like that for doctor appointments now. So, don’t mind me for blowing up your news feeds on social media those days, I’m just happy to not scare everyone away!

If you knew me 5 years ago, you would know that I’d do my hair and face to wear pajamas on the couch. I look back and think high maintenance.

Now, I only do it if I absolutely have to go out, and even that has become doctor visiting only.

I have spent the majority of my morning in my office (read:bathroom). I have even brought the laptop with me a few times, but it is a little bulky, so I have written majority of this via my phone.

Snapchat-7209659767999928242

I’m feeling pretty rough today, and I hate that feeling bad has slowly become the norm in our home.

I’m trying not to be so negativistic, but it’s only been 5 months post-diagnosis, and I am still trying to grieve the ‘healthy’ me that’s forever gone. I’m still trying to process everything that’s is happening. It is a lot for a person to take in lightly.

I’m trying to find that positive lining in all of this chaos, so I guess I will be happy it is Friday – Another end to a week where I don’t feel good.  Another beginning to a weekend where I want to do nothing.

But, It Could Be Worse.

Also, I joined the 23andMe IBD Study, and I have never been so excited to receive mail in all my life.

Now all I have to do is spit and return it. And then, in a few weeks, I will learn all about my genetic history!

I am ecstatic to see the results. Watch me not even be Irish.

20160805_165804.jpg

Thank you for reading, and for keeping up with My Crohn’s Journey.

More Info On Crohn’s Disease at

www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com

Previous Posts on It Could Be Worse:

Pills & Potions

This Week Was Cancelled

IU Double Balloon

5 Facts About Crohn’s

So What If I’m Bitter?

Pill-Cam Result’s & My Crohn’s Plan

Another Year Gone

Scheduling, Scans, Samples

So Your Sayin’ There’s A Chance?

No Little Lambs For Mary

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3 Comments Add yours

  1. Stephie says:

    Personally I wouldn’t be bothered about the rash, yes I would have giggled to 00steve about it but the guy maybe in the same boat as you allergic to certain types or it could have been a recent flare. Oh and my teeth always seem flat after a filling. Much love.

    Like

  2. I liked your close up and personal photo. It was very real.

    Liked by 1 person

    1. Thanks. It was very real, I almost didnt share it. My eyes are a little swollen tonight. 😢

      Like

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