Confessional Friday

Needed something to entertain me, so I will do confessional Friday!

I confess....

I am having a hard time with my emotions lately (so if I snap your head off, I apologize in advance) because my blood work and medications are so off.

I am getting a hair cut tomorrow and cannot wait.

I am not excited about my birthday at all. I will now be closer to 40. blah.

I have been keeping to myself lately, because it's easier than risking being hurt by others.

I don't want to clean the house this weekend, but it must be done due to us hosting a party next weekend.

time to be honest

I've had a lot on my plate lately and even more on my mind. Think it’s time I finally speak up.

I'm not well. I have two auto immune diseases and they are both pissing me off. I have Crohn's Disease and Grave's Disease. Look them up if you are interested.

Right now on top of that, I have a sinus infection. While that may not seem like a big deal to some of you. Think again for those of us with one of the above diseases or both.

I had to make a conscience decision today on whether to take the antibiotic to clear it up, or whether to let it "clear itself up". I wish number two were an option.

Instead, I begged the doctor not to send me to the ER because my heart rate was low and my O2 level was super low. I begged her to give me 30 minutes to get the O2 up as I knew that I was cold when I came in and those stupid finger monitors suck. I knew that I had just taken my beta blockers 2-3 hours earlier, so my heart rate was at its low for the day because the meds were actually working for a few hours. I won that battle. O2 came up, and well....my heart rate stayed at 60.

Instead, I went over the one antibiotic I could take and the new risks that are in research over this one med and my conditions.

You see, not only do I have Crohn's Disease and Grave's Disease, I also have a crazy high heart rate without beta blockers (which is caused by Grave's). I also have a huge inflamed thyroid....that is swelling both on the outside of my throat and the inside, which makes swallowing pills, food, liquid, and spit pretty exciting (this is also the Grave's Disease). I also have low potassium without medications (this is due to Crohn's disease). I also take chemo medication to try to keep my Crohn's under control. I also have days where my brain doesn’t seem to function correctly due to Grave’s. The Grave’s gives me tremors on my right side that are similar to Parkinson’s.

Because of these things, the simple antibiotic that I was given can be life threatening to me. As mentioned above.

http://www.fda.gov/drugs/drugsafety/ucm341822.htm

“ The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart.”

Do you see that above? Because of this, I have to cut my beta blocker dosage in half so that I don’t get a “potentially fatal irregular heart rhythm”. Because of this, I have to monitor my blood pressure and heart rate every 2 waking hours to make sure my heart rate doesn’t get to high because I have to decrease my beta blockers or too low because I have to take the antibiotics. Win-win? More like suck-suck.

And before you ask, yes, I have to take the anti-biotic. Because as mentioned above, I am on chemo pills to suppress my immune system so that something else doesn’t take over. If I ignore a simple sinus infection, things could become VERY bad and VERY QUICKLY.

So for those of you that think I exaggerate or am lying about my conditions, research. Ask questions. Listen to me. Take the time to be my friend or my family, instead of talking behind my back. Either accept that this is my life and stand by me or walk the hell away, because I am tired of two faced “friends” or family. If you think this is about you, it just might be.

I do have some true family and true friends that have stood by my side for me and for Ben (you know who you are). And for those people, I am forever thankful. There aren’t too many of these people that have been there for us through these tough times, but they are there forever. Some of them I’ve never even met. Some of them have been in my life for all of it.

So, while this seems like I am pissed, I am grateful for those that show that they are there. Sometimes all it takes is a simple phone call or text or email or FaceBook message or comment. Just to say you are praying and you care.

I really really appreciate and love the un-conditionals in my life. Thank you!

Medical update - May 21, 2014

It's easier to post my health updates here and then share the link then to post the update 20 different places.

So here we go....

Went to the Endocronolgist today.

I am still hyper thyroid and my heart rate was high AGAIN.
So we are increasing my dosage on the anti-thyroid pills (much more increasing and she may want to just remove the thyroid; she told me to start considering surgery) and we doubled the dosage on my beta blockers to get my heart rate to a more normal rate.

After that, I went to my GI.

My Crohn's is very aggressive and I have ulcers on my surgery site.....SO, I get to go back on my fun (not!) chemo pills, 6-MP (aka Mercaptopurine). I will start out at a slow dosage and work my way up to where I need to be. I have taken these before and I get extremely nauseous with them. so we start slow this time.

Here is a link on the 6-MP for this interested:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682653.html


After 3 months (and another set of scopes) if things aren't better, I will pair the 6-MP with a biologic drug such as Cimzia or Remicade. Cimzia is injections that I would do myself. Remicade is an infusion done at the hospital via IV.

So keep me in your prayers! Hope everyone is doing well.

HEALTH UPDATES!!!

It's been a while since I have updated this thing.

What's been happening in my world of health?

Well, I had surgery for my Crohn's in August. This past Friday I had my first endoscopy ever and my first colonoscopy since surgery. Fun times, right? At least it's a good nap. lol

After 8 months, I learned that my Crohn's is back and in flare. This time, its attacking my surgery site. More fun. I have a follow up appointment next month and we will decide the plan of action for immuno suppressants.

I learned from the endoscopy that I have chronic gastritis, inflammation of the stomach. So add 2 more meds to the mix.

In other news, I have Grave's disease as well. Man, my body is having a party and its a dirty one. lol

Grave's disease is an auto immune hyper thyroid disease. So, I am currently on anti thyroid meds and beta blockers to keep the heart under control. I have had some very scary times with this thyroid issue. Including a few forced days off work per my doctor's orders.

My thyroid is swollen on the outside of my neck and on the inside. Having trouble swallowing pills and food.

The endocrinologist is having a hard time regulating the thyroid and there has been talk of removal. Not so much fun, but right now, I just want to feel better.

So there you have it. I've had a lot of people ask for a health update lately and this seemed like the best way to post it. Other than this, we have been spending a lot of time with family lately. It's nice living closer to the family.

If you could keep me/us in your prayers for health answers, that would be great! thanks!

30 Things You May Not Know About My Invisible Illness

30 Things You May Not Know About My Invisible Illness
(this is normally shared during invisible illness week. It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there.

1. The illness I live with is: Crohn's Disease

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: My doctors believe that I have had Crohn's for 15 to 20 years. I can remember symptoms for much longer than that though.

4. The biggest adjustment I’ve had to make is: that I have changed so much that my friendship circle is no longer the same.

5. Most people assume: I'm exaggerating about my pain, symptoms.

6. The hardest part about mornings are: Waking up. Insomnia is terrible for me. So when I finally get to sleep, I feel like the alarm clock goes off minutes later.

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: my phone and/or Kindle Fire HD

9. The hardest part about nights are: insomnia. I just would like to be able to lay down and fall asleep. Not toss, turn, toss, turn.

10. Each day I take: 4 pills. This is down from 32 that I was originally taking.

11. Regarding alternative treatments I: do take pro-biotics and other supplements.

12. If I had to choose between an invisible illness or visible I would choose: I don't want to choose. If I had a wish, it would be to have neither.

13. Regarding working and career: I work in mortgage. I work full time.

14. People would be surprised to know: I am so worried about "the other shoe dropping". I am terrified of the if/when with this disease.

15. The hardest thing to accept about my new reality has been: The limitations!

16. Something I never thought I could do with my illness that I did was: become an admin for a great IBD group on FB. (ibdjourneys). I have made so many close friends with IBD.

17. The commercials about my illness: irritate me. I mean, why does that chick look so lost all the damn time? someone get her navigation on her phone.

18. Something I really miss doing since I was diagnosed is: just being able to jump up and go. To hold plans and not have to cancel at the last minute.

19. It was really hard to have to give up: SALAD!!! I still can't get up the courage to try it.

20. A new hobby I have taken up since my diagnosis is: I do a lot of reading. A LOT!!!

21. If I could have one day of feeling normal again I would: go to a party and not leave early, or go on a fun date with my husband.

22. My illness has taught me: That I have more strength than I ever could have imagined, and that while I may be sick, I will NOT let it take over my life.

23. Want to know a secret? One thing people say that gets under my skin is: Try this supplement, or that supplement. I hear it cures Crohn's. really? there is no damn cure! UGH!

24. But I love it when people: reach out to me, just to see how I am, or just to say hi.

25. My favorite motto, scripture, quote that gets me through tough times is: Phil 4:13 and/or "This too shall pass" I repeat these to myself quite often through out each day.

26. When someone is diagnosed I’d like to tell them: to do their research. Research the hell out of it. Ask questions. Don't be shy. Find an excellent specialist.

27. Something that has surprised me about living with an illness is: my pain tolerance. I have an unbelievable tolerance for pain.

28. The nicest thing someone did for me when I wasn’t feeling well was: just hugged me. Sometimes that is all it takes. or a simple text. or email.

29. I’m involved with Invisible Illness Week because: we need awareness (It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there).

30. The fact that you read this list makes me feel: Like you care to learn more about this disease and care to learn more about myself.