embracingcalm | A long post about medical stuff and my appointment yesterday.

I have a pituitary tumor, a prolactinoma. I have had it for a long time.

Twenty years ago when I first noticed symptoms, I attempted to get bloodwork for it but I was without insurance and was therefore ignored. One doctor (a man) told me that if I didn't want to lactate I shouldn't play with my nipples so much. Instead of treating my pituitary tumor they put me on a slew of mental health drugs which have never provided much help for me. I attempted at one point, to take my life, was sent to the hospital and begged them for my duration there to check my prolactin levels. After several days someone put in said order, and they came back to report that my prolactin levels were in fact significantly increased. I was then put in a wheelchair, moved across the hospital, given some radioactive drink and shoved into the MRI tube where I got to enjoy fun laser sounds for what seemed like forever. Some hours later, or maybe it was the next day I was given the results which showed that I did have a pituitary tumor. I was released from the mental health ward with a note that I should get a pituitary scan every 6 months. During this time a lipoma is also found on my spinal column around c-3. I have it removed. The surgery was projected to take around 30 minutes but it ended up being 6 hours because it was wrapped in tendrils around my spine.

I was unable to continue getting MRIs despite the order to do so likely due to a lack of insurance. When I tried to make my appointments I was denied and due to being ill I was only working a part time job which wasn't enough money to pay for Obamacare with rent and not enough hours or enough diagnosis for me to get financial assistance. The hospital did put me on more severe psyche meds though and gave me access to a community mental health drug provider. I got put on Klonopin which admittedly did lower my overall anxiety. It did such a good job that I wasn't worried about anything... well, until I had a rebound panic attack. I went through that cycle for a couple of years. My spouse at the time was abusive prior to my diagnosis and then left while I was in the hospital and I guess because I was dealing with picking up the pieces from that and peering through a thick fog of numbing meds I just stopped trying to get answers about my pituitary tumor.

After some time I tried again through a low income service. It took months but I got another dedicated pituitary scan and it again showed a tumor in the same spot. At that point though, I was told it was "just a little blip" "something that lots of people have" and of no concern despite my remaining elevated prolactin levels and the implications of leaving it untreated. So, I stopped tying to treat it and thankfully the more concerning symptoms (things like nausea and anxiety) had lessened. Sure, I still had issues sleeping, and lactation... but I could function without throwing up every time I entered a hot room or bent over too fast.

Eventually though the projectile vomiting came back to an extent that I was throwing up bile several times a day and was unab;e to keep down water. Plus, a slew of other signs and symptoms popped up. I developed a tremor in my hands, a complete intolerance to temperature change, massive hive break outs, mood swings, increased insomnia etc etc. So I went back to the doctor determined to have this looked at. I noted my pituitary history in my intake notes. At that appointment the doctor ordered bloodwork which showed elevated numbers of white blood cells. Instead of seeing this as a medical issue it was interpreted as stress and anxiety so I was once again put on different psyche pills.

This set up p[ills made me extremely sick and unstable. My body would reject them after just minutes from swallowing and on days when they didn't I spent the day in a terrible craze. I went back, instead of taking me off them when I reported vomiting they gave me more pills, a mood stabilizer to even things out. My health spiraled. I was unable to get to class because I couldn't drive, when I did make it to school I spent most of my time in the bathroom or I would have panic attacks and shove myself into tiny alcoves or under tables. I had to drop out despite perfect grades because my mental and physical health had completely plummeted.

I talked to my doctor about removing me from one of the drugs which is a dangerous anti depressant that shouldn't just be pulled off and she said it should be fine because I was only on them 8 months. I was not fine. I experienced severe flulike symptoms for months. However, after my body adjusted I stopped throwing up so much. At some point after I left school my husband and I got married. Equipped with insurance I tried to seek care my lessened but still present vomiting and persistent unchanged insomnia, tremors, general pain, fatigue, and skin reactions, and headaches. So, I get a new doctor again noting my prolactinoma in my intake papers and they did another blood panel which showed the same general issues all my previous ones had. However, instead of focusing on my already confirmed prolactinoma they tell me I likely have a rare autoimmune disease called MCAS. I was not given a DNA test, she did not order more bloodwork to test for prolactin and despite me bringing it up it was more or less ignored. I'm told more or less that there is no good treatment option and instead I should take... some psyche meds to manage anxiety and make general lifestyle adjustments like "avoiding triggers" (though she did not say what) and exercising more. Then was told we should do another blood draw in a month because my white blood cells were clearly elevated by stress. She adds on that I can't get on disability for MCAS which I wasn't trying to (and as a side note is untrue).

I refuse the pills of course because I'm done with it. At this point I feel like there is no hope for this matter. A couple weeks later the election happens. The people in the state I lived in voted overwhelmingly for Trump. So, after a combination of hearing years of his campaign rhetoric, feeling medically neglected and fully taking in how easily people from that region label otherness my husband and I decided that the state just wasn't safe for us and our tax money was not going to projects and values that matched our own and we moved to the place he was born.

I got pregnant pretty soon after moving here. I had wanted a baby really for the first time in my life. I realized that at 39 it might be nearing the end of my chances and I was still feeling sick... and I guess I just wanted to give my husband something because I felt very ill like I might be dying or something. While I was pregnant my symptoms lessened and everything was good but then I had some weird pain and a very small amount of brownish taupe fluid soI went to planned parenthood. Why I did that I have no clue, we have good insurance but I guess I was ashamed and sad and just used to being a [person without insurance. They confirmed a missed miscarriage but the meds were crazy expensive out of pocket and I wasn't in my right mind. So, I ordered drugs to help from an online provider who sent them in the mail. I took them as directed and nothing happened. I waited a week, and nothing happened. Now at this point I was severely ill. I have photos from the time and it looks like I was beat up my face was so dark under my eyes and my skin sort of had a gross yellow tinge. Finally my husband convinces me to go to an OBGYN. They do an ultra sound and blood tests to determine that I have had a dead thing sitting inside me for nearly a month. They tell me I have sepsis. They give me an option to take medication or immediately go into surgery. I take the meds because, as you can likely tell from the remainder of the story I have some medical trauma. I ended up taking the meds on my birthday because it was a Friday and I needed my husband available for me incase I needed to go to the ER.  That was just over a year ago. Since, I have been treating my nausea with very potent indica. I still have daily aches, headaches, hot/cold intolerance, hives, insomnia etc, and a newfound dizziness.

About two or three months ago while walking the dog I had an incident where I very nearly fainted then after getting myself inside experienced some odd visual effects. Then, not so long ago, I had the thought that I would like to stop smoking marijuana. About 15 hours after stopping the vomiting started up again with a severe headache at the base of the back of my skull. Again, my husband convinced me to see a doctor.

I agreed to see a doctor because I (completely convinced now my pituitary tumor was nothing wanted to have my thyroid checked. An appointment was set for the end of July then my doctor reviewed my records and moved it up several months stating it sounds like a serious situation. That brings us to yesterday.

I go in and explain my symptoms, my family history, the matter of early death via heart disease in my dad's family and my dad's weird Grave's disease hands. The first thing she asked was: "Have you ever been given an anti nausea medication for your vomiting? When I said no she said, well, let's start there instead of prescribing you anxiety meds. She very compassionately listened then felt my thyroid and reported she didn't feel an enlargement of growths. Then she started asking about my 20 year old pituitary tumor diagnosis, the removal of my lipoma, labs done on the lipoma (which I was never informed the results of), and my paternal grandmother's fight with brain, lung and heart cancer. I walked away from that appointment with orders for comprehensive bloodwork including a full thyroid and endocrine panels, an EKG to address potential heart problems since my grandfather died of a heart attack in his 30s and my dad has rare Graves' disease signs, an MRI and dedicated pituitary MRI to look at my tumor and if it has spread since I did have another brain adjacent tumor (my lipoma) and so on.

My care is better here and that's good but now I'm sort of angry because it's not as if I didn't deserve e to be heard and given proper care before. Also, if I have had a pituitary tumor for 20 years it very well might be a contributing factor to my miscarriage last year... EHll, perhaps, had I not been medically gaslit my hormones would have been more normal and I would have wanted a child when I was younger. Maybe if I hadn't been put on drugs that made me so so sick I could have graduated with the degree I had been working toward degree instead of leaving with a 4.0 because I was too sick to not throw up every 10 minutes.

I don't know y'all. I'm so angry but I'm also thankful I'm finally being taken seriously.