I haven’t posted in over six months but received some encouragement to do so.
Up until a few months ago, I had reached the point of agonizing pain every day. Pains in upper and lower abdomen and feet, hands, fingers, toes, etc. My gastrointestinal problems were a myriad of symptoms, odd things were coming out of my nose which was itchy all the time with cracks, scabs and bleeding in my nostrils. I gained about 60 pounds and and had a tight huge belly, appearing 8 months pregnant. Other symptoms included severe fatigue, headaches, severe depression and miscellaneous things.
Now - the pain is still chronic but not agony most of the time. I’ve lost 27 pounds and still have a way to go and now just look about 4 - 5 months pregnant. My joint aches are improving and I can walk without feeling like my bones are breaking. The fatigue is still there and the emotional fallout from feeling so badly for so long. I’m not well, but seem to be recovering.
Back to Square One
By ArtBirdy on Apr 1, 2011 | In Announcements | Send feedback » | Edit…
So…round and round and round she goes, where she stops nobody knows…
The physicians group I was working with had finally made me think I might get some help and conclusions to this illness lasting well over a year and a half. Unfortunately, they have “visiting” resident doctors and interns and the last doctor that gave me hope was just visiting as a resident. He will complete his full requirements in May and go to another practice.
First of all, I am sorry about my last post, which I wound up deleting. It was just self-pitying and I apologize.
Today I had a follow-up with the endocrinologist. I am going to a practice that has doctors of all specialties who previously were teaching medical students. The gastro dr. and endo. dr. have been working together because they can’t come up with any answers to my illness.
I haven’t written in a while. Just trying to hang on. Working 60-65 hours a week in chronic pain and stress is wearing me thin.
So my OB/Gyn and the lab decided rather than doing a blood test at 2:00 a.m. (which would have been the correct procedure for blood-borne parasites), they redid a regular blood test and did stool tests from collections at 2:00 a.m. despite my arguments. All came back negative so this is a dead-end.
My gastro-intestinal pain continues every day; some days are severe and I close the door and cry in my office. The itchy legs, bumps in mouth and slimy feeling behind my teeth (even right after I brush), strange looking things from my reddened, itchy, nostrils, on and off chest pains and pressure, fatigue, etc. continue. My nose is filled with open wounds. Some are slit-like and others look like bored holes. Now I get rashes on my back on and off that scab over into large bumps and if I scratch them to relieve the itch, they bleed profusely. My belly is at an 8-month pregnant appearance all the time and I am tired of people asking if it is a boy or girl, when I am due, etc.
The pain is still there. Every day. I still appear to be 7 months pregnant. It’s intolerable but somehow I get through each day.
My new internal medicine doctor with a group of physicians who are supposed to look at a patient “as a whole” may be a dead-end. The doctor is nice and very sympathetic but I think she thinks I am delusional as far as thinking I have parasites. She did order ova and parasite fecal screenings for me though, but only one (not the three day sample). I haven’t received the results yet. My doctor did feel my belly and had a look of surprise on her face and said “wow, you really are bloated.” No kidding! The doctor has referred me to a new gastroenterologist in their practice and I had to wait for them to call me to set the appointment. When they called me to set the appointment they said this was an “IBS referral.” So, it goes in circles again.
I had to gather and bring in all of my medical records from the 12 doctors I had seen in the past year and a half. Of course I read them first and copied them. I noticed that my OB/Gyn folder had no mention of the fact that the first lab my blood was sent to had reported they had seen something that looked like a parasite, couldn’t identify it and forwarded it to the state lab. I had written a narrative for the doctor that included reference to the doctor telling me this…so, they probably think I am delusional. In fact, I started thinking the same thing.
I’ve never felt so lonely in my life. I am thankful I have my two kitties.
My upper and lower abdominal pain has been severe for the past week. I have now broken out in a rash on my back which turns to open “crater” like mounds, then scab over. My head is aching constantly. My blood pressure is high every day and never was before. I was given an Rx for spasming, to supposedly ease my pain, by the last gastro doctor. It is contraindicated with some other medication I have to take so I am having to take my blood pressure every day to see if I can take it. I’ve only taken it a few times because my blood pressure has been high, but it was not much help anyway.
Last night, I was in such bad pain, that I needed something. I found a bottle of an old strong Rx I had I took one. It eased my pain a bit, but my reaction to that medication is different than most people’s. It makes me hyper. I was up all night. I went to work today exhausted.
Lots of pain today. I took some sedatives and slept most of the day because I couldn’t deal with it.
Feel like I’m losing it. I don’t even know what to believe anymore. Sometimes I think my negativity, guilt and emotional pain is what’s causing my body to be toxic.
It’s getting harder and harder to do my job. I have feelings of paranoia at work that people are talking behind my back, and that my bosses will use me through the busy season and then just fire me.
Everywhere I go, people talk to me about my being pregnant. They ask when the baby is due. They ask if I know if it’s a boy or girl. I don’t know what to say, so say nothing. They must think I’m a horrible mother-to-be. This is a hard issue for me, as I have no children and went through extensive fertility treatments several years ago. Now I appear at least 7 months pregnant - it is so physically and emotionally painful.
Got a call from my OB/Gyn’s office yesterday. The nurse said that my blood sent to the state lab appears “clear"…they couldn’t see any parasites, but they are still sending it to CDC for further analysis and verification. She also said they were still testing my white blood cells. I had a lot of questions and she had no answers.
This news totally knocked the wind out of me. I feel like I’m back to where I started 14 months ago. I closed my door of my office and cried for about 2 hours - which of course made my symptoms even worse.