So after calling my doctor every day last week and getting no response, I called again this past Monday and said I felt like I have been abandoned and I still haven’t gotten my referral to a pain specialist. This is important because he refuses to write me any pain medication to go with my chemotherapy anymore. (I wrote a post on it in my health log. He’s apparently notorious for this and for discrediting patient’s symptoms.)
So his assistant calls back and checks into things and I need an appointment with my GP to get a referral to a pain specialist, it turns out. So I try to schedule my appointment with a GP and they can’t see me till NEXT YEAR. I’ve had various problems with the clinic I go to, one of them being I never see the same doctor twice. Officially sick of this, I’ve decided to change doctors.
Unfortunately, since I’m on Medicaid, the BEST doctors I can get are rated 3/5 stars on Health Grades and usually those doctors are no longer accepting new patients. A lot of the better doctors are not even accepting Medicaid patients anymore.
After two days of going through the list, checking backgrounds and calling EVERYONE. I finally found a doctor that was 3/5 stars, accepting new patients, accepting Medicaid patients, and able to see people without waiting over a month. I’ve changed my primary to Dr. Surekha Bandlamuri and HOPEFULLY it will be a good choice (since I’m only allowed to change doctors ONCE a year on medicaid.) Having someone who KNOWS me and what I’m going through regularly is going to be a great help not to mention I’ll get referrals for a pain specialist, dermatology and a referral (hopefully) to Mayo Clinic so they can try to figure out what the fuck is wrong with me.
Spinal pain, hip pain, nausea, headache, mild fever. Ughhhhhhh.
My loyal Poopdog has been with me all day.
Mom and gramps are in the ER cause his blood pressure was 200/75 and he was confused as hell this morning. He was exercising and watching movies at four am this morning and he thought it was 7 pm ish.
I’m so exhausted. Chemo kicks the shit out of me.
My Rx was finally filled but I had to call a resident GI at the hospital so she could write a Rx for me. She didn’t even hesitate: she knows Remicade can cause the symptoms I complain about. Time to find a new doc or something.
My doctor’s medical assistant called back and she said they’re writing the Rx for Tramadol one more time but, “The symptoms don’t match with my diagnosis so we’re sending you to a pain specialist.”
Let’s talk about my symptoms for a second:
- Abdominal Pain
- Abdominal Distention/Bloating
- Pain after eating
- Lack of appetite
- Frequent watery diarrhea
- Stomach pain that radiates to the back
- Rectal Bleeding
- GERD/Acid Reflux/Esophagitis
- Joint Pain, especially in the hips
- Night Sweats
Here are the symptoms that come with chemo:
- Lack of appetite
- Spinal pain
- Joint pain (everywhere including my fingers)
- Skin Pain/Sensitive Skin
- Night Fevers
I have pain every day. On a good day it’s around a 2-3, on an ‘eh’ day it’s a 4-5, on a shit day it is around a 7-8 with spikes of 9-10: we’re talking pain so bad you cry and writhe. Sometimes when my diarrhea gets so bad I spike to a 10 even if it’s a good day.
Before chemotherapy I was going to the restroom 20+ times a day and eating over 6000 calories to maintain my weight. Now I’m eating a more normalized diet, and on a bad day only go about 13-17 times a day. Good days outnumber bad now and I tend to average around 4-6 times a day, but the days after chemo I tend to go 0 to 1 time a day which is flipping amazing.
Let’s talk about my diagnosis: Severe Refractory Microscopic Colitis.
The symptom of this is:
- Drug Resistant Frequent watery Diarrhea
I’ve been two two GIs in the past 6 years. Both of them highly suspect I have Crohns, but every time they scope me I look PERFECT except for microscopic inflammation so I get the diagnosis of Lymphocytic Colitis. (P.S. I also have an idiopathic auto-immune kidney disease in remission called Membranous Nephropathy and people with one auto-immune illness tend to collect them all like Pokemon.)
While I’m glad I’ll be seeing a pain specialist and I don’t fault my doctor for not giving me an arbitrary diagnosis (I love it when scientists only deal with the evidence), the fact remains that I have documented symptoms that don’t line up with my diagnosis and they are severe enough to be disabling. Telling me over and over, “Well, these symptoms don’t match your diagnosis” makes me feel frustrated. I know something is wrong. My family knows something is wrong. I feel like the doctors think I’m making half this shit up.
Funnily enough, a lot of people with Crohn’s have similar stories to mine: doctors didn’t believe them, it was years before they got a diagnosis (a few people had to wait up to 10 years for one!) The disease is notoriously hard to detect and since it is a disabling one nobody wants to give a diagnosis of it arbitrarily. I understand that. It’s just scary and frustrating when I have all these unaccounted for symptoms and my doctor keeps talking about getting a colectomy and I still don’t have a diagnosis for anything other than something that causes watery diarrhea.
metaphorsaredeadly said: Wow. I can’t believe that! I take tramadol for my pain and with my chemo and I’ve never had my license compromised because of it.
Yeah, I’ve been on it well over a year and no problems. I’ve been driving since 17 and I haven’t even gotten a parking ticket. When my wallet was stolen I tried to get a renewal and they ask if you’re on drugs that prohibit driving on the side and I answered yes. I also stated I do not DRIVE on days when I use it. And, even though Tramadol isn’t listed as a medication that deserves a suspension on their little list (it’s also officially a non-narcotic non-opiate medication) they still put my license in limbo for about a month now and keep threatening to revoke it.
tetra-hedron said: I hope your doc gets your note and sees how important this is. That’s no good
I called his assistant again and said just to have him write it and not worry about my license cause I can’t drive when I’m in pain anyway. As of tonight I still have no Rx and my chemo is Friday. I’ve been trying to get pain meds for two weeks now and I only have 10 pills left in my old supply (which I have been rationing). Today I was in pain and didn’t take any.
MY DOCTOR IS REFUSING TO REFILL MY PAIN MEDICATIONS
Because DMV is still threatening to take my license because I am on Tramadol some of the time. I never EVER drive while taking tramadol.
I informed my doctor I would rather have pain medications than DRIVE. Because I am in severe pain a lot of the time, especially after chemo.
For the second month in a row I can’t get my pain meds before chemo and the pharmacy and doctor’s office are pointing fingers at each other.
I don’t care who’s fault it is. Fix it. I’m in pain.
Woke up with wrist pain on my outer right wrist. It felt like a throbbing ache. This isn’t the first time it’s happened but…I’m left handed. What?
Well. Despite keeping everything clean and dry with q-tips, my navel has infected again. Wtf, mang.
10pm: Oh my back kinda hurts.
11pm: Gonna take some pain meds. My bones hurt.
12am: Now my stomach is cramping. Huh.
1am: I’m feeling kind of nauseous and everything hurts. Maybe I have to fart. Yeah, a fart will fix everything. Where did these goosebumps come from?
2am: *RESTROOM APOCALYPSE*
Now: *THE WALKING DEAD* hnnnnghhhrrrllllllll