Sunday, September 6, 2009
I'm a homebody. I like to be home with my family and animals (I think I'm becoming a crazy cat lady), in my room with my soothing candles, in my bed with my comfy linens. I like to be surrounded by what is familiar and soothing to me. I'm the type of person who carries everything she might possibly need in her purse, just in case. It's who I am, and because I've let my homebody self rule my life, I've really really become anxious about going on trips or sleeping over my boyfriend's or friend's house. Instead of thinking of all the fun I would have, I think instead of all the possibilities of things going wrong. I could be in a lot of pain, my stupid stomach could act up and cause some embarrassing situations, the bed might make my pain worse, I won't have my comfort movies or TV shows that I record, etc.
It's tough. Especially when it starts affecting my relationships with other people. Particularly when I just got into a new routine where I go to bed much earlier than my friends and boyfriend. I also don't get to be surrounded by all of my pillows that ensure that I don't twist and turn resulting in a very sore, grumpy Jenn.
I know I'm making a bigger deal out of this than I should. People do it every day. And heck, I'm not even going to be away for more than 24 hours. I tell myself that and it seems to only make matters worse. I swear I'm slowly becoming more and more of a hermit. But I'm going to do it, come hell or high water.
Sunday, August 30, 2009
1. The illness I live with is: Fibromyalgia and Osteogenesis Imperfecta
2. I was diagnosed with it in the year: Fibro: 2005 OI: 1997
3. But I had symptoms since: Feels like forever
4. The biggest adjustment I’ve had to make is: Planning ahead and stopping when my body tells me to
5. Most people assume: I live with a "normal" amount of pain and that I should just deal with it
6. The hardest part about mornings are: Everything-- I hate mornings, my body is ridiculously stiff
7. My favorite medical TV show is: House!!
8. A gadget I couldn’t live without is: My cell...I don't really use gadgets to help my Fibro
9. The hardest part about nights are: Getting to sleep, sometimes the pain is too bad to let me sleep
10. Each day I take __ pills & vitamins. (No comments, please) 8
11. Regarding alternative treatments I: am open to them and welcome any suggestions
12. If I had to choose between an invisible illness or visible I would choose: Is neither an option? lol I suppose invisible, that way I can appear to be just like everyone else
13. Regarding working and career: I'm scared of what limitations my illness is going to create for me and that I'm afraid that people will not respect me as much as my peers
14. People would be surprised to know: That I really struggle with the emotional and mental aspects of being in pain all the time
15. The hardest thing to accept about my new reality has been: That I can't do everything I've want or have wanted to.
16. Something I never thought I could do with my illness that I did was: ?
17. The commercials about my illness: provide a totally unrealistic picture of what Fibro is like
18. Something I really miss doing since I was diagnosed is: Being relatively carefree
19. It was really hard to have to give up: Doing all sorts of fun activities with my friends
20. A new hobby I have taken up since my diagnosis is: Blogging
21. If I could have one day of feeling normal again I would: Play sports and run and laugh and have great sex lol
22. My illness has taught me: To be patient
23. Want to know a secret? One thing people say that gets under my skin is: everything (regarding my illnesses)...stop giving me advice if you have no idea what I'm going through
24. But I love it when people: Understand me and offer to help me with something, or completely understand that my pain limits the things I can do
25. My favorite motto, scripture, quote that gets me through tough times is: way too many to list
26. When someone is diagnosed I’d like to tell them: it's time to get organized and don't settle for something--fight for what you believe is right
27. Something that has surprised me about living with an illness is: How much wiser and well-versed I am because of the situations I've been through
28. The nicest thing someone did for me when I wasn’t feeling well was: simply hold me and tell me that they understand and that they will help me get better
29. I’m involved with Invisible Illness Week because: We need to become visible!
30. The fact that you read this list makes me feel: Honored
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Wednesday, August 19, 2009
For those of you who are not familiar with services provided to you on campus:
"Section 504 Subpart E of the Rehabilitation Act of 1973 requires all post secondary schools (college and vocations), who receive Federal aid, to provide an equal opportunity to all handicapped students to all programs and activities. A handicapped person is 'Anyone with a physical or mental impairment that substantially impairs or restricts one or more major life acitivities, such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.'"*
There is a disability office on all campuses that is available to those with mental and/or physical disabilities. For someone with a physical disability they provide things such as help with parking (my college allows me to park in the handicap spots in all lots including faculty and staff lots--HUGE help), referrals, registration, providing a notetaker if writing for prolonged periods of time affects you, as well as being a mediator between you and your professors. They also help a great deal with those who live on campus, but since I'm a commuter I'm not too familiar with those accomodations.
The disabilities office will provide you with a letter to pass along to your professors giving a brief run-down things you need help with. For example, my letter essentially and politely says that I cannot be discriminated against and that I need extra help with some things, such as: extended time during tests, exams, quizzes, in-class assignments and use of a computer for essay exams. It also states that I have flare ups and that my conditions may cause me to take additional breaks and I may even miss classes due to pain. The letter ends with the office asking that my professors be lenient with their attendance policies and allow me to make up any missed work.
Some colleges are better than others but it's worth a try! You never know, you're school could be a hidden gem. In fact, I found out through Laurie Edwards' book "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties" that DePaul University in Chicago has a Chronic Illness Initiative to provide help and support to those with chronic illnesses on campus. How awesome is that!?
College life is stressful enough, we need to make this environment as accessible and easy as possible. But remember, the disability office won't seek you out, you have to go to them!
Laurie Edwards' book:
Saturday, August 8, 2009
I spoke to my pain management doctor about this and she replied snottily with "Well what do you care, you don't work and school is on break?" Uhhh I care because I'd like to have a life. Hell, I'm pretty sure I'd be happy with being able to get all my laundry done. So she's going out the window. I can't tolerate that attitude.
To top it off, I haven't noticed any change in my pain. In fact, I think the pain may be worse. It seems like this pain is more exhausting, more draining. Typically when I'm in pain I get this stubborn streak and bust my way through it (I pay for it later, of course). But this pain, I'm lucky if I can get out of bed. It's particularly tough now because I spend a lot of time going to my doctors, 2-4 times a week. So I have all these engagements that are eating up my time on top of this stupid medicine.
It's tough. I was speaking to one of my doctors and he asked if I was experiencing any sadness. Uhh no. I'm angry and frustrated and irritated and I want to scream at the top of my lungs. I want a vacation from my body.
Wednesday, July 29, 2009
1. Candles--I always have a candle going when I'm in my room. My favorites are all from Yankee Candle and are Spiced Pumpkin, Spiced Cocoa, Creme Brulee, Vanilla Cookie, and French Vanilla. As you can tell I'm all about making things smell like I've baked all day long =) Savvy consumer hint: check out and see if there is a Yankee Candle outlet near you...I always make around three trips a year to our outlet just for Yankee Candle and save tons of money!
2. Hot tea-- I only drink Cozy Chamomile Herbal Tea and Mint Medley from Bigelow Tea.
3. Music-- My relaxation music is my classical playlist on my iTunes. It includes all of Bach's Brandenburg Concertos (2, 5, and 6 are my favs!), Clint Mansell (he composed some amazing songs, especially the song from Requim for a Dream), David Garrett, all the songs from the Harry Potter and Lord of the Rings soundtracks, and all of the Trans Siberian Orchestra songs. My playlist has a bunch of other pieces, but those are my go-to songs.
4. Books-- There is nothing more relaxing to me than getting lost in a fictional (or sometimes a nonfictional) world that is so different from my life and my set of problems. It's nice getting wrapped up in someone else's life.
5. Comfort Food-- Unfortunately none of my go-to comfort foods are healthy, but hey, they do the trick! =)
6. Baths-- Take a nice warm bubble bath surrounded by candles with soft peaceful music in the background.
7. Expressive Art-- This can take many many forms, but I tend to either write, scrapbook, or make art journals. Sometimes I vent out about the stresses of life or I just scrapbook about silly stuff.
8. Movie/TV Night-- Plan a relaxing night in your PJs with snacks while watching your favorite movies or television shows. My go-tos are Gilmore Girls, House, The Big Bang Theory, the Harry Potter movies, or the Lord of the Rings Triology.
9. Breathing Exercises-- The only one I find to work is this: breathe in the good and breathe out the bad. While I take a deep breathe in I visualize fields of flowers, lit candles, or a warm snuggly bed. On the exhale I breathe out all the pain, stress, and heartache from the day. It really does work!
10. Hug!-- Hugs are universally great.
What are you waiting for?! Go off and relax!
Monday, July 27, 2009
I think I'm going to find another pain management doctor. I found that whole experience to be terrible and no one deserves to be treated like that. Isn't this a pain management office? Shouldn't you be trying to make your patients as comfortable as possible and make the experience as easy and pain-free as possible?
What really kills me is that the office has a policy where if you're late, you have to pay $100. Where's my $100? I was there exactly on time. She was the one who was late.
Sunday, July 26, 2009
I hate it. I hate the phrase and I hate that I have to say it. It's my own personal clause: Jenn, she'll have to see.
I feel like I can't make even the most impromptu plans anymore. I feel like it's a constant tug-of-war game between my social life and my health. Things I used to jump at the chance to do are passing me by. I'm either in too much pain or my stomach is feeling less than up to an adventure. I can't win.
I miss the days where a friend would call me up to see if I wanted to go into the city (New York City) and I would immediately say yes, excited and ready for the adventure. Now it's a different story. It's bad enough that I'm missing out on cool experiences but I also feel like I'm slowly losing my friends. They don't get it. They can't even begin to conceive the kind of pain I'm in. They don't know what it's like to be in horrible pain day in and day out. So they just don't get why I'm hesitant to go out and do x, y, or z.
I've read other blogs where the writers have said that they've just had to switch things around, mainly having more gatherings at their house. This is a great solution...for someone with their own place and own life apart from their immediate family. It's harder when you're a teenager or young adult. I live at home...a very very small house that barely allows its three inhabitants to breathe. There is no room to have friends over. And my friends are in the same situations, so having a gathering at their house is out as well.
It's hard in this transitional phase of life. We're adults, yet we still live like kids. It's not so great for our social life. Therefore I find myself saying "we'll see" far too often for my liking and it sucks. It really does.
Friday, July 24, 2009
Monday, July 20, 2009
The National Pain Policy Act of 2009 has already been passed in the House and is pending a vote in the Senate. The bill has five main goals or objectives.
1. Address the barriers that can prevent proper care for those in pain, such as research, knowledge, fund, and patients feeling free to open up about their pain.
2. Expand the program of pain research at the National Institute of Health.
3. Create a grant program which aims at improving a health care professional's knowledge and ability to assess and properly treat pain.
4. Create a conference on pain.
5. Requires the Secretary of Health and Human Services to create and execute a national outreach campaign to educate the country on pain, specialists, treatment, and other options available to those suffering from pain.
To give you an idea of what you can say when you write to your senator, here's my letter:
Dear Senator (insert name),
I am writing to you in regards to the National Pain Care Policy Act of 2009, S. 660. This bill has been passed in the House and will hopefully be passed in the Senate as well. This bill has a few, very important goals. One is to address the barriers presented to those in pain as well as expanding the program of pain research at the National Institute of Health. An additional objective is to create a grant program which aims at improving a health care professional's knowledge and ability to assess and properly treat pain. Finally, section five requires the Secretary of Health and Human Services to create and execute a national outreach campaign to educate the country on pain, specialists, treatments, and other options available to those suffering.
As on of more than 76.5 million Americans suffering from pain, this bill is incredibly important to me. To put this daunting statistic in perspective; pain affects more Americans than cancer, heart disease, and diabetes combined, and it is the number one reason people utilize their medical providers. I am a twenty-one year old female who suffers from Fibromyalgia, a chronic widespread pain disorder. I deal with pain day-in and day-out. For people like me, who will never be without pain, this bill could be our shot at living a more comfortable life.
Not only will this bill tremendously help pain suffers across the country, but it will also cut costs, for under-treated pain drives up costs. This is estimated at $100 billion annually in health care expense, lost income, as well as lost productivity. Personally, I spend around $5000 annually in medical expenses, co-pays, treatments, and medications, and I have health care, not including a loss of productivity or income. This is an unnecessary cost and burden placed upon myself and many other Americans. It can be prevented with your help.
In conclusion, please support the National Pain Care Policy Act of 2009, S. 660. This bill has the potential to change my life and those like me.
So what are you waiting for? Go write your letters!
Sunday, July 19, 2009
Wednesday, July 15, 2009
It all started when things "blew up" with me and my boyfriend of two years. And by blow up I don't mean some dramatic event, but essentially we realized that things were really off lately. Looking back I realized that I was mostly to blame. Why? Because I wasn't expressing how I truly felt. Yes I would let him know that I was in pain and that I was sad/upset/fed up, but I never really explained it to him. And because of that we began to grow distant. He would get upset with me and I would get upset with him and honestly neither of us really knew why. We sat down and talked about it, well I mumbled incoherently through tears, but I digress. We decided that we would take a break and in order to give me time to get my stuff together. Well as soon as we said those words, everything clicked and started to fall into place. (We've since gotten back together =)
I realized that I needed to truly express myself and my feelings. What I've never realized or admitted to myself was that being in pain all of the time is ridiculously taxing mentally and emotionally. There was such a great disconnect in my mind. Yes I knew I was in pain but I never stopped to think about how that affects my mental state and my emotional state. What a breakthrough!
Once I realized that, I knew that I needed to start focusing on myself more. Take more "me time."
I also realized through this that friends can be truly wonderful if you allow them to be. I never really told anyone how I was really feeling because I was afraid that I'd wind up being the "Debbie downer." I just wanted to be normal. Well, if you sit down with a friend and express how you're actually feeling without editing the icky stuff, you'd be surprised how receptive and understanding they can be. I sure was.
It's exactly like what Jenni from chronicbabe.com says...we need to build a supportive team. And through this almost break-up I've started doing that. I now let my friends know exactly how I'm feeling. If they suggest going to see a movie and I'm not feeling up to snuff and not really down for sitting in agony throughout a movie, I'm going to let them know that at this time my body isn't ready to sit still for two hours, but I could be up for x y or z. It's really simply once you initially do it.
Onto the last lesson. This one was probably the most difficult for me. I decided that I had had enough of my doctor throwing random prescriptions at me without listening to me and I dumped him. So I made an appointment with a pain management physician at a local hospital and she seems pretty good. We've got a plan--Elavil, Lyrica (again), Zanaflex, and Lidocane patches. I'm not sure about all these medications but I'm willing to give it a go. I've also started doing "Body Balance" which is a liquid vitamin whose resorption rate is much higher than regular vitamins. In addition to this I've worked out a plan with my old chiropractor who is now willing to give me light adjustments every couple of weeks. (I can't have them as frequently or as "rough" as others because of my bone disorder, OI)
It's a start, I'm not sure if any of it is going to work out, but I'm excited about it and I am willing to try it.
Isn't it amazing how something can seem so horrific but can really bring such joy and happiness?
It's important for us young people to really communicate with others. Explain things in detail. Yea we might come across as weird, abnormal, freakish, hypochondriacs, a waste of time, etc. but we aren't! We deserve the right to feel stress-free, pain-free(ish), and happy. Unfortunately we're the only ones who can change that, we're the only ones who can make a difference in our lives. And it really does start with opening up and just talking. Make sure that those you surround yourself with know what you're going through. You can't expect them to understand and empathize if they don't know anything. My one friend told me that she had not idea what kind of pain I was in, she assumed that it was like her pains...like when she woke up with a crick in her neck or whatever. By simply telling her that my pain is different and in an attempt to describe it she now has a better grasp on what I deal with day-in and day-out. And I'm not saying that you need to share every single detail, but just open up the lines of communication.
I promise you, you won't regret it.
Saturday, July 4, 2009
It's a tough pill to swallow, knowing that because of your health, you are not able to chase after your dreams, whether it be a music or dance career, an athlete or firefighter. All of these wonderful professions demand so much of your body and realistically you cannot have that occupation and physically okay.
Lately I've been really struggling with this concept. Living a life based on what my body can safely do. I want to be able to do all of the things I've dreamed of, the things that I am mentally and emotionally capable of doing. It stinks sitting on the sideline and watching those do what you've so desperately wanted to do. And this goes beyond a career choice. I hate basing my everyday decisions, such as going out with friends, or going into NYC, or going to party, on my health and how I'm feeling that day. It sucks, plain and simple.
There is a magnificent show currently on Broadway called In the Heights that talks about Latinos finding their place in the world and in their community. Some characters wistfully think about what their life could have been like if they or their parents stayed in their native countries, while other characters wish to get out of Washington Heights to move onto better things. I relate to it because I'm a sick girl living in a society where health and wellness are so greatly valued.
Do I suck it up and trek on or do I sit and take care of myself and potentially risk missing out on fun and important things? How do I balance being "sick" and being "normal"? Where is my place in the world?
Wednesday, July 1, 2009
(1) "I Got the Sun in the Morning" from the play Annie Get Your Gun
(2) "Here Comes the Sun"--The Beatles
(3) "Innocent"-- Our Lady Peace (David Cook's version is cool too)
(4) "Good Day"-- Jewel
(5) "The Middle"-- Jimmy Eat World
(6) "Love is All Around (Mary Tyler Moore Theme)"-- Joan Jett
(7) "Carry On My Wayward Son"-- Kansas
(8) "These Hard Times"-- Matchbox 20
(9) "Float On"-- Modest Mouse
(10) "Smile"-- Nat King Cole
(11) "You Get What You Give"-- New Radicals
(12) "This Town"-- OAR
(13) "Downtown"-- Petula Clark
(14) "Stand"-- Rascal Flatts
(15) "Beautiful Day"-- U2
(16) "Stuck in a Moment"-- U2
I seriously recommend listening to all of these songs. Most of them have inspirational lyrics to them, but a couple just make me smile.
What about you? What do you do when you just feel like you can't move on? Do you have a special playlist too?
Monday, June 29, 2009
"Everything was beautiful and nothing hurt."
How lovely would it be to have a day like that?
Friday, June 26, 2009
What he, like many other doctors did was completely disregard a patient's request and well-being. I was a wreck and actually felt really violated--he did not do any unprofessional, but the way it was handled really really left something to be desired. Yes, I know there has to be some boundaries, and there are times when it's inappropriate for you to have someone in the room with you. But come on, a girl should be able to have her mother (significant other, friend, the cookie monster, whomever) hold her hand if she wants to. I told him this and his response was that in his 30 years of practice he's never had a family member in the room with a patient. Well buck-o, in my 21 years of life I've almost always had my mother in the room with me. She knows me. She knows when I'm about to have a panic attack the size of Justin Timberlake's ego. She knows what to say to relax me, soothe me, and make me laugh. She makes these scary, new tests bearable. I'm good with the MRIs, X-rays, bone scans, cortisone shots, and trigger point injections; I'm pretty sure that by now I can do them in my sleep, but the stomach thing...definitely not for me.
See the problem with new doctors and jerky doctors is that they don't know what will and will not put their patients at ease. They also presume things. He didn't realize that we have been through hell and back again since I was a baby. If she hasn't attacked or sued a doctor yet, I highly doubt she's going to start now, and believe me, she's had cause to in the past. See, the problem with doctors is that they don't get to know their patients. We need to connect with them so that we can build a solid and trustworthy rapport. I'm not talking about cheesy connections, but professional connections where they know where we're at physically, emotionally, and mentally. They need to know what our expectations are and what we are willing and not willing to do. They need to know us! We need to start demanding an actual conversation with our doctors; it's the only way to make it bearable when going to doctors. And why shouldn't we? We are entrusting them with our very precious lives! They are temporarily employed by us, why do we feel the need to bend to their wills? We need to ensure that the doctor is there to make us as comfortable as possible while also maintaining our health.
So what I'm encouraging you to do is simple: speak up. If you're uncomfortable about something, speak. If you need a minute to collect yourself, speak. If you want to take a different path, speak. Speak up and eventually a doctor will hear you.
Tuesday, June 23, 2009
So we left it at that. I limited my activity and surprise, surprise, still managed to break bones. Around 14 or 15, my pain had jumped off the charts and we found a “team” of doctors in a hospital in New York City. I found a new geneticist, rheumatologist, and orthopedist. My diagnosis of OI was confirmed as a mild case and I was also diagnosed with Juvenile Rheumatoid Arthritis. They assumed the pain I was in was caused by the JRA. So I went on anti-inflammatory medication and aqua-therapy. Problem was the pain wasn’t going away. The pain in my lower back and right hip was so excruciating that I missed almost a month of school in just one marking period. So we trekked on and found more doctors.
My battle with this unknown source of pain would continue for 2-3 years with new doctors, treatments, medications, physical therapy, and tons and tons of testing. I finally found a new rheumatologist who dismissed my diagnosis of JRA and gave me a new, even more illusive diagnosis: Fibromyalgia. After years of what felt like being tossed around from doctor to doctor, test to test, and medication to medication I was skeptical and ignored my diagnosis, just waiting to see what the next doctor could concoct. Now, 4 years later, after a confirmation of my FM diagnosis, I am accepting my diagnosis of FM and learning to live as a Fibromite.
What about you, what's your story?