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.
Wednesday, May 21, 2014
Thursday, April 24, 2014
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!
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!
Tuesday, October 15, 2013
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.
(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.
Thursday, September 5, 2013
A to Z because I am bored
A. Attached or Single - attached!
B. Best Friend- Ben and my Mom
C. Cake or Pie- cake! yummy!
D. Day of Choice- Saturday mornings
E. Essential Item- My phone or laptop
F. Favorite Color- blues, greens, purples
G. Gummy Bears or Worms- yes please lol
H. Hometown? I'm from Glasgow, KY. I grew up in Irving, TX.
I. Favorite Indulgence- beef jerky. Mainly Robertson's beef jerky
J. January or July - since I have been on Prednisone for a year and a half, I would have to say January since I get hot so easily
K. Kids? No!
L. Life isn't Complete Without- my family
M. Marriage Date- 12/03/11
N. Number of Brothers and Sisters- 1 biological brother, 2 step sisters
O. Oranges or Apples- neither!
P. Phobias / Fears? losing one that I love or having someone I love be chronically sick.
Q. Quotes- This too shall pass. (I tell myself this daily right now, sometimes every hour or minute)
R. Reasons to Smile- I always have a reason to smile. Laughter is the best medicine. I try to laugh a lot.
S. Season of Choice- Spring
T. Tag 5 People- Anyone who wants to do it.
U. Unknown Fact About Me: I have lost a lot of people that I thought were true friends since being sick. It's sad, but its not hard to reach out to someone with even just a few caring words.
V. Vegetable- okra (is that a vegetable?)
W. Worst Habit- smoking
X. Xray or Ultrasound- I have had so many of both in the last year and a half that I swear I glow now
Y. Your Favorite Food- scallops. yummy!
Z. Zodiac Sign - Leo
B. Best Friend- Ben and my Mom
C. Cake or Pie- cake! yummy!
D. Day of Choice- Saturday mornings
E. Essential Item- My phone or laptop
F. Favorite Color- blues, greens, purples
G. Gummy Bears or Worms- yes please lol
H. Hometown? I'm from Glasgow, KY. I grew up in Irving, TX.
I. Favorite Indulgence- beef jerky. Mainly Robertson's beef jerky
J. January or July - since I have been on Prednisone for a year and a half, I would have to say January since I get hot so easily
K. Kids? No!
L. Life isn't Complete Without- my family
M. Marriage Date- 12/03/11
N. Number of Brothers and Sisters- 1 biological brother, 2 step sisters
O. Oranges or Apples- neither!
P. Phobias / Fears? losing one that I love or having someone I love be chronically sick.
Q. Quotes- This too shall pass. (I tell myself this daily right now, sometimes every hour or minute)
R. Reasons to Smile- I always have a reason to smile. Laughter is the best medicine. I try to laugh a lot.
S. Season of Choice- Spring
T. Tag 5 People- Anyone who wants to do it.
U. Unknown Fact About Me: I have lost a lot of people that I thought were true friends since being sick. It's sad, but its not hard to reach out to someone with even just a few caring words.
V. Vegetable- okra (is that a vegetable?)
W. Worst Habit- smoking
X. Xray or Ultrasound- I have had so many of both in the last year and a half that I swear I glow now
Y. Your Favorite Food- scallops. yummy!
Z. Zodiac Sign - Leo
Wednesday, August 28, 2013
Surgery (Aug 9, 2013) and post op
Well, now that I had my first post op appt, I figured its time for the full update on surgery and post op.
This may be a long post and graphic, but I want it documented for my own reasons.
My surgery was scheduled for August 9, 2013 at 2:30pm. I had to be there at 10:30am that morning for blood tests and IV hydration. I arrived at 10:30am and was checked in and in the pre op room pretty quickly. I was given an IV and blood draws. And we waited. Me, Ben Schlaht, Mom, Dad, David, and Ben Simmons. I was taken back for surgery around 3:30pm.
so now is where it gets graphic.
I knew that I had scar tissue built up (as it was causing obstructions/blockages) in the small intestine at the terminal ileum. We knew it was bad as a scope wasn't able to go through, what we didn't know is exactly how bad it was. My surgeon pulled all of my intestines and colon out to do a run through to find all the damaged areas. The area that was diseased was described by my surgeon as being "sausage feeling" meaning hard. When he started examining it further, it literally started crumbling in his hands. This is NOT good. Had I put off the surgery any longer, they believe that I would have had a rupture and gone septic, which can ultimately kill you.
Once he started removing portions, the diseased tissue just kept getting longer and longer. I also ended up having a ton of blood loss as the mesentery artery started crumbling as well. I lost a lot of blood. All in all, I lost around 18 inches of small intestine, several centimeters of large intestine, my appendix, and my ileocecal valve. And again, a lot of blood.
My surgery was supposed to last about 2 hours and that time was doubled once they were in there.
Waking up in recovery did not come easy for me. They had a hard time pulling me out. When I finally came to, what my family describes to me makes me cry, but oh so thankful that I made it. I was gray from lack of blood and looked dead. This scared my family a lot.
I ended up staying in the hospital for a full week. I went in on a Friday morning and was discharged the following Thursday evening at 9:20pm.
Recovery has been trying. I had around 20 external staples in the abdomin. I have to sleep in a recliner as I can not lay flat. I still have a lot of surgical pain. I can't lift anything over 5 pounds (even a gallon of milk weighs more than that!!!). I shouldn't be bending over too much. I am only able to drive when I am not taking pain medication. And I sleep. lots. I am currently down 16 pounds since surgery. I have no appetite and have to force myself to eat. I have no energy.
I am almost 3 weeks post op. Most days I feel like I have been hit by a truck. Mornings are VERY hard.
I still have a long way to go. I still have at least 4 weeks of being off work.
My external staples were removed today. I have some non metal type staples that are internal that will stay forever. I am making an appointment with my GI for next week, as I will have to go back on all of my immuno-suppressant meds (HUMIRA, 6mp, etc). It is believed that my Crohn's Disease is VERY aggressive. I will more than likely need to remain on the meds for the remainder of my life.
That is what I have for now. Please please please continue to keep me in your prayers.
Thank you to everyone that has been there for us and reached out to me. I miss people, I miss my friends.
and most importantly, I want to thank my wonderful husband, Ben. He has been amazing. Some of the stuff that he has had to see and do during this, most people couldn't handle. He is my rock.
Also, my mom! She is a God send! I scared the shit out of her more than once. She has been there to dry my tears, talk me off the ledge, drive me to Dr appts, and listen to me when I think I can't do this anymore.
My dad! He drove 13 hours each way to be there for my surgery. He ended up staying about 6 days. He sat at the hospital and helped/talked to me while others had to work. I love him so much and it meant so much that he was able to be here for me.
I would be lost without Ben, my mom, my dad, and David. Thank you all so much!
This may be a long post and graphic, but I want it documented for my own reasons.
My surgery was scheduled for August 9, 2013 at 2:30pm. I had to be there at 10:30am that morning for blood tests and IV hydration. I arrived at 10:30am and was checked in and in the pre op room pretty quickly. I was given an IV and blood draws. And we waited. Me, Ben Schlaht, Mom, Dad, David, and Ben Simmons. I was taken back for surgery around 3:30pm.
so now is where it gets graphic.
I knew that I had scar tissue built up (as it was causing obstructions/blockages) in the small intestine at the terminal ileum. We knew it was bad as a scope wasn't able to go through, what we didn't know is exactly how bad it was. My surgeon pulled all of my intestines and colon out to do a run through to find all the damaged areas. The area that was diseased was described by my surgeon as being "sausage feeling" meaning hard. When he started examining it further, it literally started crumbling in his hands. This is NOT good. Had I put off the surgery any longer, they believe that I would have had a rupture and gone septic, which can ultimately kill you.
Once he started removing portions, the diseased tissue just kept getting longer and longer. I also ended up having a ton of blood loss as the mesentery artery started crumbling as well. I lost a lot of blood. All in all, I lost around 18 inches of small intestine, several centimeters of large intestine, my appendix, and my ileocecal valve. And again, a lot of blood.
My surgery was supposed to last about 2 hours and that time was doubled once they were in there.
Waking up in recovery did not come easy for me. They had a hard time pulling me out. When I finally came to, what my family describes to me makes me cry, but oh so thankful that I made it. I was gray from lack of blood and looked dead. This scared my family a lot.
I ended up staying in the hospital for a full week. I went in on a Friday morning and was discharged the following Thursday evening at 9:20pm.
Recovery has been trying. I had around 20 external staples in the abdomin. I have to sleep in a recliner as I can not lay flat. I still have a lot of surgical pain. I can't lift anything over 5 pounds (even a gallon of milk weighs more than that!!!). I shouldn't be bending over too much. I am only able to drive when I am not taking pain medication. And I sleep. lots. I am currently down 16 pounds since surgery. I have no appetite and have to force myself to eat. I have no energy.
I am almost 3 weeks post op. Most days I feel like I have been hit by a truck. Mornings are VERY hard.
I still have a long way to go. I still have at least 4 weeks of being off work.
My external staples were removed today. I have some non metal type staples that are internal that will stay forever. I am making an appointment with my GI for next week, as I will have to go back on all of my immuno-suppressant meds (HUMIRA, 6mp, etc). It is believed that my Crohn's Disease is VERY aggressive. I will more than likely need to remain on the meds for the remainder of my life.
That is what I have for now. Please please please continue to keep me in your prayers.
Thank you to everyone that has been there for us and reached out to me. I miss people, I miss my friends.
and most importantly, I want to thank my wonderful husband, Ben. He has been amazing. Some of the stuff that he has had to see and do during this, most people couldn't handle. He is my rock.
Also, my mom! She is a God send! I scared the shit out of her more than once. She has been there to dry my tears, talk me off the ledge, drive me to Dr appts, and listen to me when I think I can't do this anymore.
My dad! He drove 13 hours each way to be there for my surgery. He ended up staying about 6 days. He sat at the hospital and helped/talked to me while others had to work. I love him so much and it meant so much that he was able to be here for me.
I would be lost without Ben, my mom, my dad, and David. Thank you all so much!
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