rashes

I’m anxious. I’m leaving in an hour to go to the hospital for an urgent MRI on my brain. I’m having the MRI at 10:30pm. The symptoms I’m having, of course, are scary in itself and the fact I need to go now, but that’s actually not what is bothering me the most. Covid is pretty bad where I am right now. The hospitals are over run with Covid admissions and they are trying to make as much room as they can by sending patients to field hospitals and anywhere else that there’s room. I’m pretty much walking into a burning building as far as infection goes because the one I have to go to is one of the worst out breaks in my province. I can’t have anyone come with me for support so my husband will drop me off and wait the few hours in the car. If anyone has had a brain MRI, it’s more terrifying than most MRIs because you have to wear a cage-like contraption on your head/face while you’re already trapped in a tiny space for up to 60 minutes and you can’t move. I’m hoping I won’t have to wear a mask inside the machine as well. The last time I had one done 5 years ago, I was able to take an Ativan to calm (and it was still scary!). But this time, because of my symptoms and blood issues I can’t take anything. I’m have terrible coughing spasms (not Covid related) so I don’t know how I’m going to manage that when I’m not supposed even move. I think this is warranted anxiety, but obviously still unpleasant. My parents had to take my dog to look after her for me for a couple days, so I don’t have that important support. My cat is wonderful but she gives love on her terms only lol 🤷‍♀️ Any kind words or wishes would be appreciated ❤️💕💪 #Anxiety #BipolarDisorder #ADHD #PTSD #EatingDisorders #SensoryIssues #InflammatoryBowelDiseaseIBD #Allergies #SinusTachycardia #Hypertension #GastroesophagealRefluxDisease #ChronicPain #Nerve and joint pain #geneticblooddisorder #chroniccough #nausea #involuntarymovements #rashes #Fatigue #AutoimmuneDisease #DryMouth #Nightsweats #Endometriosis #kidneycysts #OvarianCyst #enlargedlymphnodes #Virus #Infection #CannabisCorner #MedicalCannabis #Isolation #Loneliness #nightterrors

I’ve been dealing with mental health issues for a long time, since my first official diagnosis at age six. I’m hesitant to say I’m used to the mental health issues- I don’t think I’ll ever be- but NOTHING could have prepared me for the pain and suffering of chronic physical illness. Not the trauma, anxiety, self-hatred, isolation. Since June, I’ve been diagnosed with a few conditions that effect multiple major organ systems and I am continuing until everything is figured out. Medications are limited for me due to severe allergies and intolerance, so I have nothing at all for pain management because I can’t. I’m waiting to see if a Cannabis specialist will accept me as a patient, but who knows when or if that will happen. The past 48 hours have been a nightmare. Joint pain, swelling, loss of coordination/balance, bowel and bladder issues and now I think I’m bleeding internally from Colitis. I’m just outside of a major city and due to COVID, almost all of the hospitals are operating at over capacity, even in the towns surrounding. Even if I do go, I won’t get the help I need because there is literally no space and no staff available. I do have a phone appointment with my family doctor tomorrow but because of what’s going on, there’s not really much she can do. I don’t have family and friends near me and my parents, who are 45 minutes away need to limit their contacts due to age and health conditions. My sister works in hospital so contact with her isn’t a good idea right now. I feel bad for my husband, it’s all on him. I miss my job, and even just going outside for a walk. My friends don’t call anymore, they have their owns lives and maybe my issues are just too heavy. I’m just tired and having no pain management is difficult. It’s really hard to see the end of this. I’m not one for self-pity, but I’m 34, and I would just like to not have an obstacle to overcome (just once!). I worry that I still have many bad years ahead and if one more person tells me to “focus on the positive”, I’m going to lose it. #Anxiety #BipolarDisorder #PTSD #ADHD #EatingDisorders #SensoryProcessingIssues #InflammatoryBowelDiseaseIBD #DegenerativeDiscDisease #GastroesophagealRefluxDisease #autoimmune #rashes #Pain #Fatigue #Nerve and joint pain #Allergies #Sadness

I realize I have not been on here much lately and keeping you all up to date. I am sorry. So a, sort of, brief overview of what has been happening is that I am now being treated at MSK in NYC. I am now being treated with mechanist, a chemo pill, and it has been quite the roller coaster since I started that.
At first, my body was handling it fine so my doctor gradually kept increasing the dose. I started at the lowest dose of .5 mg and the highest does I got to was 2.0.0.0 mg before all hell broke lose. It started as a small painful rash behind both of my knees so I started wearing a skirt everyday. Then, the rashes spread to my upper legs and became even bigger, my legs swelled up to the point you could not see my anckles and huge red stretch marks appeared, my skin all over my body got extremely dry and I would go through periods of extreme exhaustion or my body temperure would drop drastically.
During this time, my Dermatologist perscibed a cream to put on the rashes that my mother had to apply for me since she helped my put lotion all over my body as well everynight. It was extraordinarily painful. I went off the chemo pills until my legs cleared up which was probably about 3-4 months. It felt like forever!
Then, I went back on the chemo pills at .5 mg everyday every other week. Again, the dosage gradually went up. I do not remember what happened, but now I am on 1.0mg for 2 days then off for 3.
About a month ago, my hair became brittle and broke off and, since we are in lockdown, my mother cut my hair before I started to look like a female version of Smigel from Lord of the Rings.
There may be a few more developments to come. I will do my best to keep you up to date. Stay safe everyone!
#mechanist #Chemotherapy #rashes #dryskin #RareDiseases #MemorialSloanKetteringCancerCenter #LordOfTheRings