Picking up the pieces

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Labradorite
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Date Joined Sep 2009
Total Posts : 1001
   Posted 8/11/2017 5:43 PM (GMT -6)   
Thanks to all who take the time to read this. I was just getting overwhelmed the last few days and need to write it all out. Its a really long rant so don't get me wrong, I have plenty to be thankful for and am!
This is the longest time I've gone where I couldn't put my health out of my mind and relax about it( its been a year and a half since I had my major health crisis). Some how I am still dealing with around 1-3 doctors appointments a week. by the time I get done with one round of follow ups either something new pops up or I'm back to the beginning of the follow up rounds again. Several weeks ago I went to my PCP for a follow up. I was happy to tell her nothing new was wrong although she looked at me like she didn't believe me. She did an annual physical and sure enough she found a breast lump that freaked her out and had me go through mammograms, ultrasounds,one surgeon that then sent me to another surgeon. I finally got the good news from that one that everything was fine but it was weeks out of my life of worrying and running around. It has taken me months to work out insurance and what I am going to do when my current one is up this month. I finally bought one but the reality is I probably cant afford it for long. the reality that I am only surviving because I get that remicade every 8 weeks is scary plus with my mother's ill health and medical bills I have to be able to support her soon as well. I am insanely thankful though that this insurance works with all of my doctors (except my Pcp who told me not to worry we would work something out as self pay) and despite saying they don't cover remicade, my GIs office let me know that they contacted them and there was no issue!
I still have a hernia that i am dealing with that is very frustrating when I have to reduce it constantly. I desperately want to get the surgery done with in the next 2 months so that I can be done with it. I don't need to have another flare and have it get worse again but on the flip side the surgeon warned me that the recovery is going to be miserable, I cant wait-_- but at the same time I'm really happy to be well enough that I can tackle it since its been bothering me so long.
At the same time Im trying to resolve family issues that have created an intolerable situation and move before the end of the year, take care of my cat that is dying from IBD (steroids barely held it off and she is declining again) and I am trying to write my thesis at the same time which is due next week, I am no where near done and have no idea how I am going to convince them to give me another semester to finish it since Ive already been given a few (though I have made progress) and the department is basically being shut down due to budget cuts. Im pretty lost at where to begin ate this point, It will get worse out but after about 10 years of dealing with near constant crohns flares, tackling the life that I was previously too sick to repair is monumental. I'm not sure how I will get there but I'm trying too hold out hope that I will

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1741
   Posted 8/11/2017 7:06 PM (GMT -6)   
Wishing you all the best with the surgery. You sure have a full plate to deal with. Try to take one day at a time. When life comes at us, sometimes it just seems relentless, but there's no doubt better days ahead. Stay positive, rested and strong. All the best.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.

sparkleplenty
Veteran Member


Date Joined Nov 2010
Total Posts : 561
   Posted 8/11/2017 8:11 PM (GMT -6)   
Sorry you have so much on your plate at once. I hate when that happens, and it almost always seems to be the case.

<hugs>

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 8/11/2017 9:21 PM (GMT -6)   
Oh Lab,

I am so sorry you are going thru all of this. If the college gives you an extension maybe you can keep your insurance? Just a thought. And if your college knows you have health issues perhaps they will be willing to work with you?

You have a full plate that is for sure. Just hang in there and take it a moment at a time. You are in my thoughts.

(((HUGS))))

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9926
   Posted 8/12/2017 5:49 AM (GMT -6)   
That does sound like an incredibly overwhelming situation to be in, I have to say. Can you cut out some of those doctors' visits for a start? I know how things mount up but 2 visits a week on average sounds like an awful lot. Follow-ups are relatively few and far between for me, but I still sometimes resent the number of times I go to the doctor's or the hospital! (Ridiculous I suppose, but I can't help comparing to when I was in my 20s and went years at a time without seeing a doctor.)

Is your current insurance college insurance? I suppose you could always become an eternal student :/ At any rate, it does no harm to ask for another extension. It would be a shame not to be able to finish your thesis, having put so much time into it already.

I just hope you will be able to sort out insurance for the future. Are you stuck with the plan you've bought or can you continue to search for something more affordable? As for Remicade, I'd get in touch with the manufacturers - ask them what you can do in the event of losing your insurance or not being able to afford it. I think they have a scheme to provide Remicade at a low cost to those who cannot afford it, but it's better to find out now while you're still covered.

Get the hernia surgery while you can! Even if recovery is a bind.

Best of luck to you; I hope things calm down.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/12/2017 9:44 AM (GMT -6)   
Good luck with the thesis! It's an overwhelming prospect without IBD so you must be an extraordinary person smile. You can do it!
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 8/12/2017 1:20 PM (GMT -6)   
Lab,

One moment at a time.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2739
   Posted 8/12/2017 5:28 PM (GMT -6)   
Lab, you are a strong lady and you will be able to overcome all problems. Explain to your supervisors your health issues and I'm sure they will understand it and give you the extension esp after you have made progress. It's hard I know but I have been in the same position. I managed to finish writing up my PhD thesis while constantly flaring up. It's doable.

Take one thing at a time. First, ask for an extension and hopefully you get the reply soon. Then, conact the surgeon to fix the hernia. Finally, look into the insurance issue.

Hang in there. {{{Hugs}}}
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 8/17/2017 1:05 PM (GMT -6)   
Thank you all for your replies! They helped so very much! I'll be back soon to make some specific responses. Hugs to all! hope you are all having a decent day
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