I hate this feeling..

I don’t know if it’s the winter or what, but I feel restless, unsettled.. I miss the city.. It’s so hard to be in a town of 300 people where they aren’t very open minded and are all Trump fans.

Where I don’t feel like I can come out about who I am in certain aspects of my life and heart because I don’t want to lose friends.

I feel alone most of the time and wish I could be anywhere else.

I put out of this vibe that all is great and life couldn’t be better, but I’m drowning in something I can’t explain.

My house is at an overwhelming point of messy and I’m trying to get it under control. But I’m switching out beds and I painted the walls and so everything is all over the living room. The house is like 450 sq. Feet as it is, so I feel like my mind is going to explode. Luckily I’m house sitting for someone else so I don’t have to be there.

This has to be causing me stress…

all I want is to get a Happier Camper, attach it to my Subaru and go..

I feel like I can’t breath..

I often get this feeling of being unaccomplished. I feel like I’ve done nothing good.. that my house is a mess, it’s usually so overwhelming. So I just let it get worse and worse. I didn’t go to college, didn’t ever get any kind of really good job, had a looser boyfriend. Now, I’m going to be 40, I live on SSD in a small town of 300 people and I feel like I’m drowning. I love my family and friends that are here, don’t get me wrong, but I want to be around people, lots of people. I want more diversity, more open minds.

I’m in the closet mostly, but only to the people of Northport, or the ones I don’t think will take it well, I know I should be ashamed, but you have no idea what it’s like to live in a town like Northport. Everyone knows your business before you do. Seriously.. not even kidding.. I’d like to find someone I’m going to spend the rest of my life with. Soon.. tomorrow isn’t promised.

I leave every summer, and it is great, but now I don’t want to go home, I’m getting this itch to be somewhere else. I go to Hood River for a fundraiser ever year, I love it there, that is my next destination. That makes me happy, but also stresses me out because I have no idea how I’m going to get there. I’ve found this thing called a Happier Camper and I can pull it with my Subaru Outback. I would love to just pack up and go for a year, maybe more.. another dream…

I feel like I dream a lot, is that a good thing? I have a dream board, or goal board, whatever you wanna call it. I look at it every day and try and manifest.

But as I sit here, and watch a cheesy lifetime movie, and glance around my messy house, the kitchen is the biggest problem, I want to cry, will I ever get my life under control?

I feel like I can’t breath….

Ugh why is life seem so hard sometimes..

Well this last couple weeks have been tough. I started my fitbit Study for fred hutch and I can’t even do what I’m supposed to.

The last two days I haven’t wanted to leave my house. I just sit around and feel sorry for myself.

I feel like I’m in a funk, I don’t know what it is I need or want. I wish I could figure out what it is.

I wish I could just get in my car and go. Go anywhere, I need a break from my nothing life, where I’m doing nothing but the same thing over and over. I want to travel, I want to get my own RV and just disappear.

But I don’t truly believe that will ever happen.. but I believe in mericals..

Life after Cancer..

It’s been about 3 years since I finished treatment. Some days I can’t get out of bed. I am in pain most of the time. I am afraid to eat becuase when I do the pain in my stomach is so intense I can’t move. The doctors can’t figure out what it is, my test look good. 

I feel pity from others, they feel bad becuase I am almost always not feeling good. I’m depressed and can’t show it becuase I don’t want my close friends and family and everyone who keeps saying how strong I am know that I am actually far from it. 

The fear of cancer comming back, or another cancer is so real any little pain sends me running to the Emergency Room. 

Sometimes I think I would be better off dead.. I’m not going to hurt myself, I’ve tried that but it doesn’t actually help the issue. Instead I’ve decided to change my own self, force myself out of bed, get exercise, enjoy life where ever it may take me. Hopefully someday I’ll get to live the life I always dreamed, traveling with my cat, with a airstream trailer (or a converted short school bus). But until then, I’ll keep my head up and just keep trying.

Cancer Sucks!

Over the last two years I spent 90% of my time in the hospital, which is where I was diagnosed with myelodydplastic syndrome. MDS is a type of bone cancer that does not make enough healthy blood cells and are abnormal.
I was referred to Scca here in Seattle Washington. My first appointment with my team was wonderful and I knew I would be in good hands. We set a date for September 10 where I would check myself into the Udub.
I was told chemo would take a week. I would be getting G clam a trial drug, and a very aggressive form of chemo. I am not the kind of person who shuts down and thinks this is it. Instead, the day before I was scheduled to check in I had a seven-year-old to cut off my beautiful curls. My mom finished it off with an electric clippers, I was bald and ready to go.
Beings I was so used to being in The hospital I had all my stuff ready my own blanket and pillow pet my own PJs and all kinds of other stuff. We were greeted at the front desk of 8sa and then escorted to my room. The moment I stepped into 8sa I knew I was going to be ok.
Soon my nurse arrived and it was time to get started. I received my pic line and then an x-ray to make sure that was in place. Later that night I was start my first round of chemo.
No one really warned me about how I would feel, they do tell you it going to suck, and you will feel like crap, but for me it was much worse. The first couple days weren’t so bad but by the third day I was so sick I practically slept with my puke bucket. Honestly I don’t remember a lot of that either. I had people visit me and I didn’t remember. I ended up staying a few more days than expected Because of the nausea and vomiting.
Finally I was released and went to stay at the Scca house which would become my home for the next four months.
Throughout the next month or so I was in and out of the hospital with infections. If you have a fever over 100.9 they want you to go In. The first time I went in I road in an ambulance, I felt like I was dying, I was light headed and dizzy, hot and then cold. It was terrible. The second time I went to SCCA for a checkup and they decided I needed to go back in and again was taken by ambulance to the Udub. This kept happening and I was getting discouraged. But I kept a good attitude so I wouldn’t worry my friends and family.
My second round of chemo was even worse. I was sick and felt like giving up. But I have a great support group and they got me through it. This time I spent longer in the hospital, they had given me too much chemo, I went home a couple times but never more then two days, once when my dad was visiting over thanksgiving, I was out for 6 hours and had to be brought right back in.
My counts wouldn’t come up and I ended up being in the hospital for around 60 days, at that point they were still very low, but they allowed me to go back to the SCCA house, it took 100 days and 2 weeks of a growth stimulator to get my counts back up to par. I am not sure how long I was home before I ended up back on 8NE. I spent my birthday, which I had had a small party planned, thanksgiving, Christmas, and New Years in the hospital. By the end of that run I wanted out so bad I didn’t know how I was going to handle it anymore. I was released on New Year’s Day, and was able to stay out. I did however have to go into the SCCA clinic everyday, to get antibiotics, fluid, blood or platelets, having cancer sucks, and totally changes and consumes your life. It takes all the things you used to do and puts them on hold mine and my family’s, If it weren’t for my caregiver, my mom, and all of my friends and family, I don’t know how I would have handled the stress or the work involved. My mom, cooks meals, sometimes I think I’m hungry and then I try and eat and it’s a flop, my mom will make something else. We don’t have a kitchen, but there is one downstairs that is huge, that’s were everyone goes. My mom cleans, laundry, sheets for her and mine, dishes, floors, bathroom, she has to drive me to appointments, keep my pills straight, she has to watch me toss around in bed in pain, and she can’t do anything about it. I see people with out help and it breaks my heart. You have a million pills you have to take, at different times during the day, some with food and some on an empty stomach. It was really hard to eat because the chemo drug makes your taste buds not work correctly and everything is just plain nasty and your tongue gets this weird film on it! Even drinks, some how I didn’t loose a lot of weight, but eventually they put my on TPN which is a source of nutrition. Soon they took me off the last chemo drug that was in pill form, and cost $12000 which was like $100 a pill. After they took me off this and started giving me a multi vitamin that had zinc, soon my tongue went back to normal, and food tasted better, I remember on Christmas Eve they had prime rib with baked potato and asparagus. I had two helpings. It was the first time I had eaten food in a real long time. Needless to say my doctors were pleased. That sealed the deal of me going home the next day! After the 1st I spent another month at SCCA House and I was allowed to go home to Northport on Feb 3rd until February 17th , on February 19th I would start the process before you get a transplant. I thought that everything else was time consuming, well it didn’t hold a candle to my next month. I was at SCCA everyday except the weekend, from about 8 am to 3pm, sometimes earlier and sometimes later. Test after test were done to make sure I was ready for transplant. Well, I am and tomorrow at 8am it all starts again, I will get a week of chemo, and then my cord blood from two sweet babies. After that they say about 2 to 3 weeks in the hospital and then back to the Pete Gross house where we are staying. They say about 100 days after transplant is usually when people are cleared to go home. I will have been here 9 months, I have met so many other survivors, and people going threw all of this, it’s been nice to share the tough times with people who understand what it feels like.
I have to thank Debbie Farley, and the rest of her team for making sure we had a roof over our headswhen I was out of the hospital. My chemo team, there are a few of them so I’m gonna just group them together, also gets a thanks. All the nurses at the Udub on 8sa and SCCA clinic for putting up with me. My blue team, because I know everything is going to turn out fine. Cancer sucks, it’s been the worst thing I’ve had in my entire life and I wish it on no one. I’ve seen innocent little children and it rips my heart out.

Cannabionoid Hyperemesis Syndrome, have you heard?

(First, the sentences that are in (bold italics) are my own words, all the other information I found via Currentphychiatry.com, please take time to check it out also, there is a lot of useful information! I was diagnosed in December of 2013, with Cannabionoid Hyperemesis Syndrome,  if you are reading this take into consideration that I am a person, I was diagnosed with this, I am having a hard time believing just as most of you will too. I enjoy feedback, and your opinions, positive or negative.  I also apologize for the big word, but I did copy and paste so I could get the information accurate. I really want people to know about this, I love pot, and miss it terribly, I have to take pain medication now, and anti nausea pills and stool softeners because of the pain meds, but its better then vomiting uncontrollably which is what I was doing, I wasn’t even able take a sip of water without throwing it back up.)
“Cannabinoid Hyperemesis Syndrome (CHS) is characterized by years of daily Cannabis use, recurrent nausea, vomiting and abdominal pain, compulsive bathing for symptom relief, and symptom resolution with cessation of use.”
(I have smoked pot, since 1993, and since about 2007, I have smoked about a joint an hour, at least twelve hours a day. I was stoned all the time, I used for a pain reliever.)
“In 2011, 18.1 million people reported Cannabis use in the previous month; 39% reported use in 20 of the last 30 days.  A high rate of use and a relatively low number of cases suggests that CHS is rare. However, it is likely that CHS is under-recognized and under-reported.  CHS symptoms may be misattributed to cyclic vomiting syndrome, because 50% of patients diagnosed with cyclic vomiting syndrome report daily Cannabis use.  There is no epidemiological data on the incidence or prevalence of CHS among regular Cannabis users.
“Prompt recognition of CHS can reduce costs associated with unnecessary workups, emergency department (ED) and urgent care visits, and hospital admissions.”                     
Mechanisms of action
“Cannabis has been used for centuries, so it is unclear why CHS is only recently being recognized. It may be because of higher THC content through selective breeding of plants and a more selective use of female buds that contain more concentrated THC levels than leaves and stems. Alternately, CHS may be caused by exogenous substances, such as pesticides, additives, preservatives, or other chemicals used in marijuana preparation, although there is little evidence to support this.
“The mechanism of symptom relief with hot bathing also is unclear. Patients report consistent, global symptom improvement with hot bathing. Relief is rapid, transient, and temperature dependent.  CB1 receptors are located near the thermoregulatory center of the hypothalamus. Increased body temperature with hot bathing may counteract the thermoregulatory dysregulation associated with Cannabis use.  It has been proposed that splanchnic vasodilation might contribute to CHS symptoms. Thus, redistribution of blood from the gut to the skin with warm bathing causes a “cutaneous steal syndrome,” resulting in symptom relief. “
(So in other words, the way pot is grown is more than likely the issue)
Diagnostic approach
“Four key features should be present when making a diagnosis of CHS:
·    heavy marijuana use
·    recurrent episodes of severe nausea, vomiting, and abdominal cramping       
·    compulsive bathing for transient symptom relief
·    Resolution of symptoms with cessation of Cannabis use.
“Compulsive, hot bathing for symptom relief was described in 98% of all reported cases,  and should be considered pathognomonic.  CHS patients can present with other symptoms, including polydipsia, mild fever, weight loss, and orthostasis. Although lab studies usually are normal, mild leukocytosis, hypokalemia, hypochloremia, elevated salivary amylase, mild gastritis on esophagogastroduodenoscopy, and delayed gastric emptying have been described during acute episodes.”
(The only way I would stop throwing up is if I was in a hot bath or shower, I was to the point where I would sleep in the bathtub.  Waking up and refilling it.)
“Diagnosis starts with a history and physical exam, followed by a basic workup geared towards ruling out other causes of acute nausea and vomiting.  Establish temporal relationships between symptoms, Cannabis use (onset, frequency, amount, duration), and bathing behaviors. A positive urine toxicology screen supports a CHS diagnosis and can facilitate discussion of Cannabis use. It is important to rule out potentially life-threatening causes of acute nausea, vomiting, and abdominal pain, such as intestinal obstruction or perforation, pancreaticobiliary disease, and pregnancy. The initial workup should include a CBC, basic metabolic panel, liver function tests, amylase, lipase, pregnancy test, urinalysis, urine toxicology screen, and abdominal radiographs. The differential diagnosis of recurrent vomiting is broad and should be considered.  Further workup can proceed non-emergently, and should be prompted by clinical suspicion.”
(I was tested for all of the above, and everything came back as it should. I still had a tough time believeing that what was supposed to be keeping my pain to a tolerable level was making me so sick)
“Treatment of acute hyperemetic episodes in CHS primarily is supportive; address dehydration with IV fluids and electrolyte replenishment as needed.  Standard antiemetics, including 5-HT3 receptor antagonists, D2 receptor antagonists, and H1 receptor antagonists, are largely ineffective.  Case reports have described symptom relief with inpatient treatment with lorazepam and self-medication with alprazolam, but more evidence is needed. A recent case report described prompt resolution of symptoms with IV haloperidol.  Treating gastritis symptoms with acid suppression therapy, such as a proton pump inhibitor, has been suggested.  Symptoms abate during hospitalization regardless of treatment, marking the progression into the recovery phase with abstinence. There are no proven treatments for CHS, aside from cessation of Cannabis use. Treatment should focus on motivating your patient to stop using Cannabis.”
(I quit smoking pot when I spent over a month in the hospital, and about 3 weeks in I quit having symptoms. It’s not proven but I read in my research it can take anywhere from 14 hours, to up to 2 weeks for symptoms to cease.)
“Acute, hyperemetic episodes are ideal teachable moments because of the acuity of symptoms and clear association with Cannabis use. However, some patients may be skeptical about CHS because of the better-known antiemetic effects of Cannabis. For such patients, provide informational materials describing CHS and take time to address their concerns or doubts.”
(I hope some of you found this interesting and maybe even useful, I plan on keeping people updated, on what I find out about this, different stories that I find of people diagnosed with CH, I am also working on my first video blog for CHS, I am already on YouTube under Madonna Regis, I have Neurofibromatosis Type 1 which is also a not so common disorder. I could write a book of my life, hospital visits, Doctors love me because I always have something that they don’t get much of. Terrible but true. I feel as though I was put here to help the medical field grow!)

All text in quotation are from Cannabinoid hyperemesis Syndrome: A result of chronic, heavy Cannabis Use  by Jie Chen, MD. and Robert M McCarron, DO. as published in Current Psychiatry. October 2013.

My Video Diary

This is my life with NF, I hope that who ever watches this can better understand what a person with NF is going threw. This is just my first Video, first try.. well I hope this reaches someone.. or anyone.. if not.. well, then its just for me.. 🙂 Stay Positive.. thats how I like everyday!

September 7th, 2012

Sometimes when I think of all things I want to out of my life, the sad thoughts, and pain I feel…  I just roll over in my bed, shut my eyes and dream of what I see in my future, where my yellow brick road will take me next…

From who I am going to fall in love with, becuase I know I will, I am a lover.. I try and picture this person, but hes blury, and maybe thats becuase I am just not ready to change my facebook status to “In a Relationship”.  I think of taking a vacation to some tropical Island, and basking in the sun.. Like I have Lucid dreams, and can control some things.. its great!! You should try it.. I can pinch myself in the dream, and know I am dreaming cuz it doesnt hurt.. Amazing stuff.. Once, I actually got into my car, and would have drove away if the neighbor dog hadn’t barked.. that was before I learned to control it.. anyway off subject. 😉

I don’t like to dwell on the past, but sometimes I feel like maybe if I just wrote it all down, and got it all out.. I would feel better, but the truth is.. I have so much to tell, I just dont know where to start. So I put if off. I have been told so many times, write a book, but I am like, then you will all know all the messed up things that have happened in my life, and wonder why does she attract such negtivity..  and maybe I am just over thinking it all, there are others much worse off and really I should just be thankfull for all I do have, which I am! I keep going back and forth, you will hear me blame myself for things. Don’t get me wrong, I have so much positive and loving gifts, and I am thankful for them.

I think positive everyday! I try and push any bad thoughts out of my mind and replace them with something good… and I am great at it.. I mean I have my days.. But for the most part I just love life!