Waiting Game

Right now, things in my life have died down, thank goodness. We’re just playing the waiting game until I get my full diagnosis and treatment’s lined up.

My diagnosis so far:

1) Eosenophilic Esophagitis

2) Hidradenitis Suppurativa

3) Arthritis

4) Depression

5) Anxiety

6) Scoliosis of the lower back

7) bulging disc in lower back

8) pinched sciatic nerve

9) Colitis

Up in the air:

1) Celiac Disease

2) Crohn’s disease

3) Ulcerative Colitis

4) Rheumatoid Arthritis

5) other digestive issues

I am on treatment for only depression, pain, and anxiety with Cybalta which I will start as soon as it comes in the mail (either tomorrow or Thursday).

I finished my Flagyl for my colitis. I am glad because that medication wiped me out. I was tired, had sore muscles, weak, dizzy, painful legs/feet, cold feet, achy joints, and brain fog. 2 days later and I feel much better after stopping. I haven’t started up the Minocycline for HS again. It seemed to make my HS worse and it’s actually died down after stopping it. I am sure flagyl helped a little too. I am just going to see what dermatology wants to do now.

I am seeing my dermatologist tomorrow about treatment for my hidradenitis suppurativa. So far, my doctor has just guessed on what to do and what meds to put me on. My dermatologist will let me know if I can have Humira or something like it, long term antibiotics (not too keen on that option), steroid shots, surgery, something else, or a combo of things.

I see a digestive health doctor April 3rd for an upper GI to rule in or out Celiac disease and am doing the gluten challenge (eating 2 or more servings of gluten a day). This was because I tested positive for a gluten allergy in blood work from February. I will also be having a colonoscopy done May 8th, the same day of the Upper GI, or sometime in between to find out what my digestive health issues are and to begin treatment for whatever they find. The doctor is on vacation until Thursday. When he gets back, I hope he will say yes to the colonoscopy being done April 3rd OR that someone cancels an appointment so I can get in before May 8th. I would hate to risk having a flare and have to put off doing the colonoscopy until the flare dies down. If I am flaring in my colon, the procedure could cause me an infection.

After the above is done, my doctor plans on running a blood test to check for Rheumatoid Arthritis and is also sending me for my pap and mammogram. Those were least on our list of things to worry about for now.

My husband and I have began to de-stress the house and we are finding ways to talk more about our feelings with each other instead of just stuffing them until we burst. I know we both do that to spare each other’s feelings, but it’s not healthy for either of us. Honesty and communication needs to be worked on for sure.

We got another TV for the bedroom. This is good in case I am stuck in bed and my husband wants to watch something other than chick flix HA-HA. We also got a bed topper and WOW! It’s like sleeping on a cloud. My back and joints feel awesome now.

My husband finally got his C-Pap machine to help with his sleep apnea. I really hope it helps with snoring too HA. I am so happy he will be able to breath easier and I will sleep better knowing he will not struggle with his breathing any longer. The neurologist said this may be why he was having more sleep seizures. That does make sense since his brain has been deprived Oxygen about 28 times an hour.

I spoke to my mother for the first time in 5 months. I am happy she is doing well and it felt nice to have some support from her through all this. She was a Nurse Practitioner so her words of wisdom are greatly appreciated. She is all about natural health and told me I am doing all the right things. She told me it sounds like I am working with good doctors and not to worry about the kidney issue unless it blocks a duct or something. Scars and cysts on the kidney are more common than people realize. It’s only when they become infected, large, or block the kidney function that I should worry. What I read said to call the doctor if I am peeing blood, have bad back pain in the kidney area, dark urine, pain when urinating, or fever. I am happy she’s doing well and hope she stays touch.

I’ve recently made a good friend with a lot of the same issues I have. It helps to talk to someone who actually understands what you’re going through and doesn’t judge or force you to conform to one way of healing. She supports my theory of healing with a combo of clean eating and proper medications. I also don’t want stuck on a long term antibiotic if I can help it.

I thought about starting a catch all autoimmune group, but not sure if I am ready for the stress of running one just yet. It would be nice for people like me who have more than one autoimmune disease to just have one go-to group or just a few favorites for support instead of jumping all over the place trying to join a group for each disease. That’s something I will look into doing sometime soon.

My husband and I met with his nutritionist today. She thinks we have a good diet going on and told us to add the dreaded exercise to our daily routine. When we get a car and I am medically cleared, we will join a gym. For now, we will be doing yoga and Pilate’s at home.

On that note, we are going to end this post and watch some Walking Dead now. We subscribed to DirecTV Now and AMC and have to catch up. It’s relaxation time before my doctor tomorrow. Ta-ta. I’ll post tomorrow after seeing the dermatologist.

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