Waiting is the hardest part! My biopsy report is showing up online tonight grayed out (I can’t click on it). I know I can call the doctor for the results Monday, but seeing that and not being able to read it to ease the worry sucks so much right now. I just want to know: Do I have Crohn’s? Ulcerative Colitis? Celiac Disease? Cancer? Something else? Nothing else? OMG, I just want to know!
For 3 days after my upper endoscopy and colonoscopy biopsies and scope, my esophagus was so swollen and ached so much. I had to almost drink 8oz of water just to get each bite of food or any medication pills down. I had pressure in my chest and back, burping, and overall discomfort with eating. I am taking a Proton Pump Inhibitor twice as day as told, a strong probiotic twice a day, a multi-vitamin and magnesium in the afternoon, and drinking lots of water every day.
For the last two days, my hidradenitis suppurativa is in, what I call, shock. My armpit, both sides of groin, inner thigh, anus, and both butt cheeks near my legs are swollen and inflamed. The lesions have all tunneled and migrated to areas around the old ones. I am in so much pain, all I can do is cry and rub Vicks Vapor rub on it. I can’t take any pain medication because of my Gerd, ulcers, and digestive inflammation. I have to wait until my husband gets his pension at the end of April to be able to afford the $37 clindamycin 1% topical lotion to put on them. $37 dollars is with a GoodRx coupon to use at Wal-Mart. Otherwise it’s over $90! I keep seeing TV commurcials for Humira and want to start that SO BAD right now! However, I have to wait until my biopsies comes back and I have to get approved for patient assistance for it. I just want relief now!
I got a letter from Family Services asking for the last 4 months of bank statements for my disability medicaid case. They want this by April 16th. That’s great news so far. At least it wasn’t a denial letter. I am going to do this next week and send them my biopsy and Digestive Health results too. I was told by a Social Security officer last week that I don’t have enough credits for SSDI and my husband’s pension is too high for SSI. That rules me out for medicaid and I have to fight for regular disability medicaid instead. I was also sent a denial letter for Food Stamps because of my husband’s pension. Do they realize I am over $3,000 in debt with the hospital, I pay about $100 a month or more for medication, and $25-75 a month to see my doctor? They have a place on the Food Stamp and Medicaid form for medical payment deductions. I guess I have to send them the dang bills and receipts! The Clinic I go to is based on income and they have a wonderful patient rep there who helps clients fight for medicaid and healthcare. She said she thought that it was obvious I have healthcare bills so, she never sent them. Nothing is assumed obvious to the government. They ALL want proof of everything or they don’t count it.
I think I have a good plan started for treatment and I would like to share it. It also helps to see it written out for me lol. I need to reset my body after the Gluten Challenge. I think that’s why my face, head, neck, esophagus, and back is breaking out and why my skin is over all itchy. I also have wheezing and coughing more than usual with itchy, crusty eyes. This indicates an allergic reaction of some kind going on.
After a good 8-9 hours of sleep:
8AM: Take my PPI pill and probiotic, have some green tea, eat some yogurt, an apple, and 1/2 cup of oatmeal.
8am-12pm: drink nothing but water
12PM: eat a salad with romaine lettuce, spinach, carrots, a small amount of cheese, and low fat dressing. Take my multi-vitamin
12pm-3pm: Drink nothing but water
3pm: have an apple
3pm-5pm: more water
5pm: Take my other PPI and Probiotic. Have another salad with baked and cut up boneless/skinless chicken and 1 cup of steamed broccoli or other veggie.
5pm-10pm drink nothing but water and maybe have celery with almond butter for a snack.
As tolerated: Yoga, house cleaning
Praying/meditating, soothing baths, pampering, relaxing games and tv shows/movies are a must.
I will be doing this for a week or so until I can begin treatment on something else. This all depends on my results.
I will be doing a Paleo/Aip diet after this ON TOP of treatments for my illnesses.
I don’t want to be a burden to my family. I will be handling my illness on my own as much as I can. My family has their own, happy lives and I am a Debbie Downer anyway.