Thursday, March 7, 2013

College, Blood Stuff and New Thoughts

Hello friends! It's hard to believe my last post was almost a year ago! I sincerely apologize for that. :( It turns out that the summer before you start your college experience was way more stressful than I imagined.

Despite the stress of that summer, however, I have officially made it to college! I'm living about 6 1/2 hours away from home in a huge city where I attend a small but fantastic University. :) This is my second semester, and as I sit here writing this post in our student center, I'm reminded of the fact that it's only been a few months despite the fact it feels like I've been here a lifetime.

This is a picture I took while
the nurse was drawing blood :)
But this isn't a Jamie's-personal-life-and-college-experience blog ;), so I'll get back to blood and all that jazz. :)

One really great thing about living in this city is that I'm actually about 20 minutes away from a treatment center! Back home, we had to drive at least 5 hours to get to the nearest HTC, and they were only pediatrics, so we knew I'd have to find some other place after I turned 18. So I came here.

My first appointment was in August, only a few days before move-in at my school. It went really well and I got a lot of questions answered, and it's just nice to know that they're right there in case of any emergencies. Or just in case I want to come in and have something checked out. I had some blood drawn and was completely finished within about 5 hours.

So far, being in college hasn't presented that many difficulties that are VWD related. I have some ice packs in my fridge, some heavy duty bandaids and gauze pads, two ace bandages and some Celox in my first aid kit. During my first semester I started running with my roommate and our other friend, but my knees really started to hurt and it got to the point where putting ice packs on them after a short run wasn't doing anything. This was probably one of the few times I've been really frustrated with the fact that my bleeding disorder has interfered with exercise. I'm not a sports person, I'm more of a sit-down-and-read-a-book-and-then-go-play-piano kinda gal, but running at our Wellness Center with my friends was something I was really starting to enjoy. It was annoying and embarrassing to run for about 10 minutes, feel the pain in my knees and then have to stop. So no more running for me. Honestly, the pain wasn't too unbearable, but what really scared me was the possibly of a joint bleed. I've never had a joint bleed before, but I've heard stories and seen pictures and I can't afford something like that when walking is my only form of transportation to all of my classes. I made a mental note to ask about running and joint health the next time I had a HTC appointment.

I have done Zumba a handful of times before, however, and that seems to be working out really well. It's fun exercise and I've never experienced any abnormal soreness or pain after an hour or so of doing it. I'll probably stick with that when I have some time to squeeze in an hour at the gym after classes. :)

My only other VWD-related mishap occurred a few weeks ago when I was in the shower. I cut my knee while I was shaving but it was so small that I didn't think anything of it. I rinsed it off in the shower and the cut was tiny. It looked more like I'd just picked a scab or something. Anyway, I'm focused on rinsing my hair and all that stuff when I look down and see an abnormally significant amount of blood running down my leg and into the shower drain. This made me think twice and I examined the cut again, only to conclude, once again, that it wasn't that big. Anyway, long story short: it didn't stop bleeding and I had to ask my roommate to bring me a bandaid because I was afraid of getting blood on the carpet of our dorm. (Side note: my roommate is a nursing major, so that's pretty spiffy. (: ) She brought in the bandaid and I managed to change into my pajamas when about 2 minutes later I notice that I've completely bled through the bandaid and blood is, again, running down my leg. So I pull out the gauze, fold it into a thick piece and then stick it onto the cut using a waterproof bandaid as medical tape substitute. No surprise, I bled through that pretty quickly as well. Turns out that it didn't stop bleeding until the next afternoon. The most annoying part of this was that I was constantly checking my jeans during and after class for blood stains and I had to change the gauze about every hour and a half. Honestly, I've never had a razor cut bleed that much. It freaked me out just a little bit, and I don't know if the location of the cut had anything to do with it or if my blood was just choosing to be more defective than usual. If any of y'all have had similar experiences, I'd love to know how you stopped the bleeding. :)

So those are my two "big" incidents. Not too bad at all. :) I'm hoping to get through all 3 years without any significant problems, but we'll see. :)

Being away from home and off at school has made me realize how truly independent we're all becoming. And I've realized that managing your chronic disorder is just another part of life. We're not that different from everyone else, because everyone has something that they have to learn to manage. For us, it's blood that doesn't clot, for other people it's an assortment of different problems and issues. But we get through them. We have to, because they shouldn't slow us down. Not even a little bit. :)

So, those are my "new" thoughts. Not sure how original they are, but it's my 2 cents worth. :)

Are any of you in college or about to graduate? I'd love to know how you handled your bleeding disorder through these years of living away from home! Any tips or suggestions? Or, for that matter, any warnings? Everything is useful and I know we could all benefit from each other's experiences and thoughts! :)

I hope you're all having a wonderful week and, for my fellow students, a wonderful semester! Leave your thoughts in the comment box below!

Much, much love,

Jamie

4 comments:

Unknown said...

Jamie... I can't remember, can you use stimate (desmopressin)? My oldest granddaughter (I have custody) is a freshman in both high school and college, although she lives at home, she is only 13 lol. She cuts herself shaving occasionally, and sometimes, for whatever reason, leg cuts bleed like that. She uses stimate and fortunately, is responding so far, although the response seems to be getting less effective. We are headed to HTC soon to see hemoc and will see what she says. VWD type 2M

Jamie said...

Dawn, unfortunately I don't respond to DDAVP. :( They tested me and my factor levels went up, but nothing changed. This was actually what made them question whether I was type 1 or type 2 because the deficiency seems to be qualitative. It's a pain because I can't take anything for minor bleeds. :p But I'm glad your granddaughter finds stimate helpful! Thanks so much for your comment! :)

Heather Sisson said...

Hello! Its great to hear your doing well away from home with VWD. I attended art school not so long ago in nyc with the same disorder. I had my fair share of odd events but ive also had shin and knee pain. And i am also a book worm. For me I started getting shin splints from doing too much at once. Make sure you have good shoes or supports in them if your running. Also I make a habit of stretching 20 minutes before any exercise (try everyday when you wake up). Yoga helps too. Anything that can build strength in your feet and get your blood circulation going.

Emily Wonder said...

My daughter (Annabel) suffered from schizophrenia for 5 years. I had no idea what was happening and didn’t know where to turn for help. It was hard then because I really didn’t understand the symptoms earlier until she was diagnosed. There was a time she decided to get away from everyone, I was not excluded. I had to sit and cry almost every day because I felt helpless as a single mother (she is all I have got). The anguish I went through taking care of her alone is beyond explanation because there was no support whatsoever from the dad or family members. I fought for proper medical care and humane treatment; I did everything within my reach to get her cured but all to no avail. Countless different medications was prescribed (Zyprexa, fluphenazine, Risperdal, quetiapine, etc.) that she was taking but all we could get was myriad of side effects such as rigidity, drowsiness, dizziness, tremors and restlessness which tends to worsen the already damaged situation. Frustration was the order of the day. I wrote a couple of messages to Ontario Mental Health Foundation for help because watching my daughter go through such was devastating. It was at this foundation someone shared a testimony about DR James herba mix medicine, how effective it is and how she went through the most difficult times of her life trying to help her mom fight Schizophrenia. Being that I was already at the verge of giving up because I just couldn't imagine waking up every morning to fight the same demons that left me so tired the night before. I had to contact the doctor,on his email  (drjamesherbalmix@gmail.com)  from our conversations; I was relieved and convinced that the result is going to be positive because I was made to contact people with worse cases. Today, the awful situation of my daughter has gone by. Her happy life is back. She is now a schizophrenia survivor and I am glad because my daily routine activities can now kick off without obstructions. Don't let Schizophrenia hinder you from living a desired life and also, never allow anyone to decide for you especially when they don't know what you have to go through to get to where you are. I was almost discouraged by the doctor but then, I remembered that: I have to shield my daughter’s destiny with courage, faith and perseverance because she is not in her right state of mind and that the bravery and freedom from fear is found in the ‘doing’. Her life is now a testimony. After my daughter got cured,from the herbal mix medicine Dr James prepared and sent to me, she said, Mom “I just thought, ‘Well, I’m a weirdo, I’ll never be normal, then I said, my daughter, life itself is a misery and we get stronger in the places we have been broken. Thanks to you Dr. James  for your excellent counseling, no more psychotic symptoms for the past 3 years and 4 months now. To know more about Dr.James and the effectiveness of his Herbs and roots extracts and he said he got cures for diseases like Bipolar,DIABETES, HPV,SHINGLES,CANCER, ALS, HEPATITIS B, KIDNEY DISEASE, HERPES, Ovarian Cancer,Pancreatic cancers, Bladder cancer,Skin cancer, Prostate cancer, Glaucoma., Cataracts,Macular degeneration,Cardiovascular disease,Autism,Lung disease.Enlarged prostate,Osteoporosis.Alzheimer's disease,psoriasis ,Tach Diseases,Lupus,Dementia.kidney cancer, lung cancer,. You can reach him on his Email at ... drjamesherbalmix@gmail.com.  I believe you will testify just like me.