Meet Steph: More than IC

Hi, I am Steph and I am a 26 year old who loves poetry, music, art and just living life. Below is the story of my health conditions including IC. What I have written below is mainly factual. This disease along with many others I will mention are not easy to deal with; However there is hope in relationships, treatments and in being positive through your situation.

As part of my family history, my mother never received the Rhogam shot for blood type differences between her and my father. This is something that may have played into the reason I have so many diseases.

From the time I was born, I suffered from re-occurring bladder, kidney and ear infections. My doctors didn't know exactly what was happening, so I was catheterized hundreds of times from age 0-8 for VCUG’s. I also underwent numerous scans and other tests to determine if my bladder and kidneys were working properly. My parents struggled emotionally in dealing with my illness. They thought I was just wetting the bed, but no matter what methods they used to try to get me to pee in a timely fashion, I was not improving. 

Shortly after my 5th birthday, I was sent to Rush University Medical Center in Chicago where I met an amazing urologist. He diagnosed me with bi-lateral reflux of the ureters with extensive kidney damage. The damage to my kidneys were stage 3 and stage 4 which ultimately meant I may need new kidneys.  My parents and I are Christians and believe in the power of prayer. I was miraculously healed of the damage to my kidneys and had the surgery where I was cut hip to hip. Awesomely, they only had to repair my ureters and move them back into place;I did not need new kidneys. The damage that was there prior to the surgery was gone. It was truly a miracle :) What I didn’t know, is that all of the catheterizations, the stretching of my bladder, frequent infections, and surgeries would lead to later problems.

Shortly after the ureter surgery, my parents realized that I couldn't smell or breathe well, and was snoring heavily at night. The doctors told me I needed my adenoids taken out because they were too were too large and were blocking my airway. I had those removed, then went on with normal life until I hit age 10. I helped my parents build their house with my siblings. I was carrying a lot of materials around the property. Due to weak abdominal muscles from the surgeries past, I developed two hernias at the site of my old incision and needed surgery to repair them. This meant more scar tissue. I also began to notice other girls getting their periods and I still had not had one. I began to have pain when I urinated, as well as frequently throughout the day and night. The stinging, burning, aching pressure, were extremely taxing on my everyday life. I kept going to my doctor and tested negative for urinary tract infections. I did have skin and dead cells in my bladder as well as traces of blood. 

My doctor began to become concerned. I was 14 when I got my first period, and I remember it well. It was horrible, and extremely painful for me- I also realized, my bladder was on fire right before and during my cycle, unlike any other pain that I had experienced.  Bowel movements also became very painful. I continued to try and use tampons and realized I couldn’t get them in at all. It was excruciating.

I then began to develop extreme mood swings around the time of my period but then repeating and cycling throughout the month. I began to not be able to handle my emotions very well and began to lash out on my sisters and brother. My emotional state began to deteoriorate due to the chronic pain. I continued to use music, photography, art, and writing as outlets in dealing with these health problems. My thoughts were so negative at this time: Why was this happening? Why can’t the doctors nail this down? Doctor after doctor on an HMO was the most difficult process mentally and physically that I had gone through. I could not see the specialized physical therapist I needed to see to try to work on my abdominal scar tissue because of conflicts with insurance.  No one had answers for me.

Finally, I was sent to a Urogynecologist who told me I had endometriosis after performing a laparoscopy. Even after that surgery, I knew something else was wrong. The pain was different from anything I had experienced. The burning/cramping/heaviness in my bladder was getting worse every year. I did realize that the pain of my periods overshadowed the pain of my bladder and I couldn’t tell the difference between what was causing me pain- my bladder, uterus or my intestines. 

The Urogynecologist then put me on birth control continuously, which I deeply regret. I was depressed, vomiting, and wouldn't stop bleeding. I went back to her and told her I needed something else to fix this problem. Every single month I would get horrific menstrual cramps and emotional instability that would last for four days. I resorted to taking Dilaudid and hot baths to try to get me through the pain. I realized the extent of drug allergies for me was a painful reality. I couldn’t take many of the medicines they wanted me to because I am so sensitive to medication. I passed out at work, passed out at college, and had to move my schedule to accomodate my monthly cycle. I would begin vomiting because each cramp was like a contraction that could almost be timed.  

The doctor then did research and whisked me off to one of the best fertility/endometriosis specialists in Chicago. He put me on what was then experimental: the Femara- Letrosol treatment which shut down my period for a year. Towards the end of the year, I began to develop headaches, lose my vision and get breast lumps that became permanent in the form of fibro-cystic breast syndrome. Shortly after these things were discovered, I was pulled off this treatment and began realizing I would live with this pain and I slowly began to give up.  Countless ER visits, hospital stays, doctors and specialists were consulted, yet none of them could answer my questions completely. 

During this time, I began to have severe panic attacks that caused me to be in the ER several times. Through counseling, prayer and family support I overcame those without drugs. I realized that all of the trauma when I was younger of people holding me down, shoving catheters in me and making me pee on a table for the VCUG had mentally scarred me. It was subconscious for awhile until my body couldn’t take it anymore. Shortly after that, I had felt two large lumps in my breasts, got them checked out and they both needed to be removed because they were questionable. I still had all of the bladder symptoms but learned to deal with them and ignore the pain.  

After all of this, I switched insurance and didn't have relief of any kind. I went to a different doctor who sent me to a different gynecologist. I had not had sex before marriage, but realized I still had a very hard time getting a tampon in. My hymen was broken due to so many medical procedures and she recognized that I have pelvic floor dysfunction.  The dysfunction is so bad that my bladder is twice the size it should be from being held back by the pelvic muscles. She tried to put me on imipramine and a different progesterone type of birth control, but I could not tolerate that.

I was 18 by then and was working when I realized I had not peed for two days. I told my boss I needed to go and my mother took me to the hospital. It was there, I met my awesome urologist who diagnosed me with severe IC and confirmed severe pelvic floor dysfunction through the surgery. My bladder looks like raw hamburger. I went in to his office and did a uro-flow test and bladder distention as well as DMSO treatments.

I have since had 4 hydro-distensions as well as rescue instills which made everything worse. It seems that once anyone goes into my pelvic region a bomb would go off and I’d be stuck with a catheter for a couple weeks with retention from my bladder not working properly. None of the treatments worked. I had been taking so many cranberry pills prior to the IC diagnosis that it had damaged my bladder. My bladder was also damaged from retention several times at 1.5 Liters. My problem is more retention than going a lot; my bladder gets so tired, I will not pee for days. I developed another cystic lump on my skull which was identified as part of the fibrocystic syndrome. 

Following this procedure, I tried birth control again, and became more depressed and anxious.  I had met my future husband and he helped me work through many of the emotional issues from  being chronically ill. Even still, there were so many issues. No one knows what it’s like to explain these things to your significant other unless they have had to do it themselves.  I had to explain my whole health history, the fact that I couldn’t have intercourse (still currently cannot) and explain that I had problems with painful orgasm and even getting aroused. How could I get aroused when the pain was so severe?   I subsequently started doing pelvic floor/visceral therapy for the pelvic floor dysfunction. I am currently still doing that and have seen amazing improvements. From all of the abdominal surgeries I have so much scar tissue and adhesions. The highly trained physical therapist will do internal work and motility work to break up thick scar tissues and move organs around that are stuck and not as mobile as they should be. 

Two years ago, before I got married, I accepted a mission. I had to get as well as I could get before marriage. I wanted to be the best I could be for my husband. People were telling me not to marry him because I couldn’t give him what he needed. That was probably one of the most painful things I had to mentally deal with. This of course is not true, he loved me and accepted me for who I am. 

Right before our engagement, I had both my gynecologist and my urologist do a bladder distention and laparoscopy at the same time. I would never recommend these surgeries together to anyone but I was determined and wanted answers. The first thing they diagnosed me with was IBS, not entirely surprising based on symptoms I was having. The surgeon was very vague and said that there were endometrial cells but she didn’t think it was that big of a deal in comparison to my bladder. I was at my wits end. Nothing was working, and I spent days in agony.  My urologist wanted me to stay in the hospital after surgery and they ended up sending me home right away. I had to get rushed back in because my bladder was at 2 Liters in retention which is very dangerous.  I ended up having a catheter for two weeks followed by a urinary tract infection caused by the catheter itself.  A year ago, I was on a plane ride and suffered an acute attack on my left foot from Raynaud’s disease. My feet will turn blue and have no circulation. I have since found a great doctor who specializes in Raynaud’s at UIC in Chicago, IL.  She also helped balance out my vitamins and noticed a few other things that were off in my blood work.

For the first time, people starting pushing my dieting habits on me. I had an inherent need for sugar my whole life. I would drink 2 Liters of Pepsi a day just to stay awake. I found out that I had a severe vitamin D and B deficiency. They did a colonoscopy to check for Celiac disease, but found that I am not celiac, but still sensitive to gluten, wheat and sugar. Knowing this information, I decided to make huge changes.  I was willing to try anything to make this pain subside even just a little. My nutritionist believed that I had a candida overgrowth. She pulled me off of dairy, sugar, processed food with chemicals, and stuck to a strict IC friendly, gluten free, sugar free, dairy free diet.  It was torture. I didn’t think I could make it. I lost so much weight, so we decided to put dairy back in. I noticed dairy didn’t affect me as much as sugar does. 

To this day I am gluten free processed sugar free. It has made all of the difference in bladder/endometriosis/ and symptoms of the other diseases. I also ended up having a breast biopsy last year for fear that I had breast cancer. The tissue was abnormal, but it ended up just being fibrous.  My thyroid is also currently in question. I have several large nodules on it, and have a lot of the symptoms of hyperactive thyroid. These are on-going things that I am being tested for. 

In the past 2 months, I have had some amazing discoveries. As I mentioned in the beginning, I have a large family history. My siblings have auto-immune diseases and random symptoms. I have been following everything very strictly but noticed that when I was attempting to be intimate with my husband, I’d have sharp stabbing pains with arousal and pain for a week after the moment of climax. I consulted my old Urogynecologist. She did trigger point therapy in my vagina to try to numb some of my muscles and make them less tight. That was excruciating, but did help me a lot.  

She poured over my medical files and photos; looking for clues that may have been missed. My physical therapist was insisting that I had blood pooling in my uterus. Based on a previous CT scan, my liver was swollen and large varicosities could be seen all around my uterus. My mother had been diagnosed with this and had a hysterectomy at a very young age. I was not happy with this, as we really wanted to start trying to have kids if possible. My doctor was upset because the varicosities were clearly there in photos from a previous surgery. The other surgeon did not tell me, I believe, because the insurance company may not have covered the surgery completely. 

Ultimately, I had two choices: Conventional hip to hip surgery or to go through interventional radiology for a procedure called “Double Ovarian Vein Embolization.”  The beauty of going through Interventional Radiology is that there would be no large scar. I ended up having two surgeries which were successful. They put metal coils and special foam into the refluxing ovarian veins to prevent the blood from pooling in my pelvis. 

After both surgeries, I had major problems with my IC. My bladder went into retention immediately. I was passing clots, and had to be catheterized 10 times in one week, as well as undergo a bladder irrigation during a urinary tract infection from the catheters. Currently I am still healing from both surgeries, and I am hoping to find some relief from the Pelvic Congestion Syndrome.  My husband and I have a positive outlook and are praying that we will be blessed with a child in the near future.

Even writing out some of these details bring back many emotions. There are so many little puzzle pieces; these are just a few. In a way, it is as if I am literally walking through some of these memories. Although it is painful to recall some of them, there is one thing that I hold on to; my faith in God. There is a reason why we go through things like this, and I have been able to talk to many people who are going through similar issues. Encouraging each other through the hardships that IC can bring really helps to keep on going strong. 

I believe it is important to never let any of these diseases rule your thoughts or become your identity.  There are so many treatments these days; as well as natural remedies that may help your situation. For me, when my bladder flares, I use rice socks, ice bags, stretches, and drinking extra fluids to try to help me cope with symptoms. 

One thing is for certain- You are never alone; we are all in this together, and we will keep fighting. :)

If you would like more details on this story or have questions, feel free to contact me at stephaniezwartz@gmail.com.

Keeping Hope in Your Heart: Lindsay

I'd like to share yet another inspiring story from a fellow IC and Pelvic Floor Dysfunction fighter. Lindsay thank you for allowing me to put your struggles and words of encouragement out there.

It all started when I was about 17, I am 21 now. I had these constant urges to go to the bathroom and I had pain all the time. It felt like my bladder was never being fully emptied. Everyone would make fun of me for going to the bathroom so much. They all thought it was in my head, even my mom.

Lindsay Danielle

 It made me upset because no one understood what it felt like as I had to plan my every move around the bathroom. I knew It wasnt in my head this pain was real and I needed to see a doctor. We saw one doctor who made no sense at all and didn't help me at all. Then we saw another one who put me right to sleep to fill my bladder and see what was going on, which upon examination she found small hemorrhages, known as petechia or pinpoint bleeding popping from the bladder walls. And during the surgery the instrument she used to fill my bladder popped out half-way of filling my bladder. 

The doctor knew right away that I had Interstitial cystitis. I tried a few medications for a while, but nothing seemed to work well. It was starting to hurt a lot at night and was affecting my sleep. Especially in college and I was three hours away from home! But I didn't want to let this get in the way of my education since I always wanted to go away and my mom was so nervous to send me. 

On an average day I would go to the bathroom around 27 times. As I continued to use medicines, cocktails and see other doctors, I noticed my bladder getting a little better. As I continued my research on this I came across pelvic floor dysfunction and thought "wow I have all those symptoms," so I called a physical therapist. She was great and she could tell right away my muscles had been in spasm for so long that it caused my hip to move out of place, which was also causing a lot of pain.

She helped me tremendously. She taught me home stretches and different things I can do to help the muscles. I have stopped seeing her because I now can do everything on my own and have not been on a single medicine in months. 

Although the pain has calmed down the urges have not. Some days are worse then others some days I'm just so busy that I forget I even have to go. Certain foods are a killer, such as tomatoes they kill my bladder. The acid makes it feel like it's exploding! I miss having a slice of pizza so much, but it is not worth the pain at all, therefore I simply learned to stay away from all tomato products. 

Although this disease has been a complete inconvenience in my life, I am so thankful that I researched things to help myself. I also didn't let it take over me and I continued to do regular things with the hope that eventually it would be manageable.

Everyday is a different day but I continue to hope for the best. I am in charge of my body and only I know best. So when something's wrong don't wait seek for help!! I hope to spread more word about this inside killer disease and hope that eventually there will be a cure for all that are struggling. 

Thank you for allowing me to share my story with you and always keep hope in your heart. 

Hunner's Ulcers Explained & Surgery Update.

If you had read my blog titled 'Update:its been awhile,' chances are you took notice of the bladder surgery I had on May 20. But just in case you missed it, I had a speciallized laser/nerve ablation procedure where the specialist went in and burned the  that I had developed over a short period of time. 

For a disease that many researchers say does not progress, my case of Interstitial Cystitis surely had a mind of its own because essentially it started out in 2007 like 90-95% of those with IC as 'Non-Ulcerative,' and became 'Ulcerative' within my 5th year of struggling with it. Even today, this disease is still very mind-boggling because it still confuses even some of the most top researchers in the country. They're no closer to a cure than they were when the disease first came about it seems.

Having the hunners ulcers completely changed my game plan because I am certain that it caused my Botox treatments to no longer be effective. With more inflammation developing, the spasms and pain intensified by the minute. How on earth did I get so unlucky to be in the 5% who have Ulcerative IC??

But I do have good news to share, despite having to undergo so many treatments over the years in order to finally have some relief.

I will however start off with the before symptoms so you can kind of get an idea of what life was like prior to this surgery to paint a clearer picture.

I may have dealt with 'IC' for the last 6 years, but around the 4th year or so I began to slowly get a hold on how to 'cope' per se with my illnesses.

There just comes a point where you begin to accept your symptoms for what they are and try to live your life amongst the pain with the treatment that is available to you.

Fast forward to early summer 2012, I began to notice a new stronger 'twinge' of pain within my pelvis that radiated deep into my lower back, causing me to struggle to walk. Everything I knew in terms of how to manage my symptoms went out the window because the disease had stepped up a notch. Everyday I dealt with the oh so familiar "IC belly, battery-acid burning, razor blades,' kinda feelings x 100

But even more painstakingly difficult was the growing amount of times that my bladder actually functioned on it's own, which meant I was having to self-catheterize anywhere between 12-15 times a day due to IC as well as spasms. My body felt at war with itself as my Lupus along with my other auto-immune diseases participated in this vicious pain cycle.

I went from being able to leave my house on occasion to hardly leaving my bed at all other than for necessity. To some, that sounds like an exaggeration, but in all honesty this is how it was for me. And it certainly wasn't a state I wanted to be in. When your 27 years old and can barely take care of yourself, let alone get around, your entire outlook on life becomes rather grim. You start to wonder is this how it's going to be for the rest of my life? I wouldn't exactly call it a pity party but a mere look into what sort of future lie ahead for me if I kept on this path.

And so just like that, my symptoms simply began to skyrocket to a whole new level. I could easily report on a pain scale that on average it was between (8-10+) daily that medication  seemed to little that I could do unless I found some sort of medical miracle...

Call it intuition, but I decided to give Botox surgery another chance in late January of this year. And low and behold that is when my specialist found the hunner's lesions, which ultimately brought me to the place where I am now.

With the hunner's removed from my bladder wall nearly 4 months later, my IC would begin to show signs of improvement. That intense, debilitating pain that I experienced 24/7 lessened, but that wasn't the only good outcome of this surgery. 

The next best things may seem small in anyone else's mind, but for me they feel like 'medical breakthroughs." Because for the first time in nearly 2 years I could void on my own without the use of a catheter more than 3-4 times a day along with decreased pain levels that my prescribed medication could now address. I definitely feel like my pelvic floor dysfunction has gotten better as well due to not having to strain to void and inducing spasms with the use of a catheter. My abdomen no longer feels like it is going to explode from pressure as soon as I wake up, although I mornings still remain the hardest time of the day besides bedtime. All in all, I feel a sense of relief within my body and all I can do is thank both my doctor and God for allowing me to gain some control over this illness until I need surgery again.

No matter how much i've gone through to get here, I know that there is no giving up and it's only up from here. 

My advice for anyone who is at an absolute low point in their journey with any of these pain disorders is to remain positive. Just remember that no matter how difficult of a time you're having, there is a silver lining, but you must be patient.

Summer Tips Chronic Illness Style

With summer officially here, it only means one thing; fun in the sun, vacations and leisurely activities. It's a chance to enjoy the sunshine, ride some waves, cool off with a bahama mama or ice cold lemonade without a worry in the world.

But for those of us dealing with chronic pain disorders, we sometimes find ourselves slowly easing into the season with caution or completely avoiding the topic at all costs.
However, there is certainly no reason to boycott it all together because we all deserve to have a little fun once in awhile; to have that chance or opportunity to kick back in the hammock and feel like life is 'brighter than the sun.'

So i'm encouraging you to take advantage of this time! Thus, i've come up with a few tips & strategies to help you enjoy the summer a little better hopefully.

1. Plan ahead. I know that for most of us, prior to a vacation, we find ourselves making all kinds of lists, from what to pack to grocery lists.

So with that said, whose to say you can't plan out your fun to ensure that you can thoroughly enjoy it. Whether you believe it or not, party planning 'chronic illness,' style can be a lot of fun because even though you may have to leave out certain elements, you can add bits and pieces of detail that are personalized. You can have friends help you put together diet friendly menu of goodies to enjoy. And if your friends/family wish to bring cocktails and foods they like, make invites BYOF/BYOB. Sometimes we have to learn to set our foot down in these sort of situations and chances are, those who love you will understand.

If you're planning a weekend getaway or vacation. Make sure to pack all your necessities, which I like to call my 'medical arsenal.' I always keep my medications all together and anything I could possibly need while I am away (which secretly in my mind means everything). Call me an 'over-packer,' but what girl isn't? But really, make a list of all the things that would make you more comfortable on your trip, especially if you're flying or driving cross country to hit the beaches. Who cares if you're packing a little on the heavy side, at least you'll be prepared for just about anything that comes you way, including a rough night in pain.

2. Who says you can't keep fun low key?

Often we set high expectations for get togethers, but who are we trying to Plan a laid back movie night with the girls. This doesn't have to be anything fancy or expensive, plus it gives you a chance to relax without any sort of obligation to entertain. I mean whose not happy with a good 'chick flick,' popcorn and contagious laughter? If you aren't, then I guess you better start living!

3. Use the weather as an excuse to catch good 'ole Vitamin D.

Now I don't mean slap on some baby oil and bake in the sun for hours, but rather sit outside for 15-20 minutes 3 times a week.

Vitamin D is absorbed into the skin through the sun and actually has health benefits in moderation.

This is actually recommended by consumer health, for more info check out this article.Vitamin D & the Sun. Another benefit of the sun coincidentally is that Vitamin D is linked with pelvic floor disorders. Studies have shown that a deficiency in D can actually raise a woman's chance of developing a pelvic floor disorder. The study can be found here Pelvic Floor & Vitamin D.

4. Improvise. Most of the time when we think of summer, the first thing that comes to mind is BBQ's, pool parties and concerts. All of these venues certainly sound wonderful, but if you're suffering from one of the many chronic pelvic pain disorders, your energy level may not allow you to enjoy yourself or participate comfortably with all the activities. So what does a girl do when she's found herself in this sort of situation? Yep, you guessed it, improvise. Just because you can't swim in a chlorinated pool, doesn't mean you can't sit back and relax in the shade, while conversing with friends.

And for the BBQ, you can always bring your own food/drinks if you're on a 'special' diet. 

As for concerts or outings that involve all sorts of obstacles, it's always important to keep in mind your limitations. Everyone deals with their own individual drawbacks and planning ahead of time on how to approach them is up to you. I could list so many, but i''ll save you the novel. My only hope is that you have a handful of friends that are supportive of your illness and will understand if you have to pass up certain plans or altar them.

5. Embrace your limitations and don't be too hard on yourself. It's all about being realistic, but also learning to 'live in the moment,' because there is no reason that you can't enjoy yourself with a chronic illness. It may hold you back in some instances, but don't let it define your entire life. It's essentially about outlining your own set of boundaries and running with the rest of it.

If you have any tips or advice that you would like to add feel free to share below in the comment section.

Happy Summer 2013, Enjoy!

Don't let your illness rob you from living your life, this is something that Tucker, the confident gal up in the photo above has taught me :)

*Disclaimer: All discussed above should not double as medical advice, thus treatments and medications/supplements should be discussed with your medical doctor.*

Support

Sup-port 

Noun

:help and kindness that you give to someone who is going through a difficult time.

This is the definition right out of the dictionary, which seems pretty self explanatory. But the differences remain in how and to what extreme or extent the support extends.

I guess you could say that support is needed all throughout life, but especially in times when you need it the most.

And for most, when living with a chronic illness such as these pain conditions, it essentially requires quite amount of support.

But often times, we are afraid to ask for the support we need, fearing that we will be viewed as 'weak,' or 'needy.'

The point is we must learn to understand that support is a key factor in the healing process when living with a chronic illness. Although you may have your faith or whichever higher power you lean upon, there is however a need for a shoulder to lean on during extremely trying times.

For most of us, we can find comfort in the arms of our family and friends, but at times when it comes to illness, sometimes finding others who truly understand is just as important.

With this support comes the feeling that you're not alone and an outlet to share your journey with others. Sometimes there are just certain aspects of our daily lives that we feel more comfortable discussing in private with those who share a similar illness rather than with someone who can only emphasize. Not to say that we don't appreciate the support or prayers of those we are closest to, because we do, but there is just a sense of comfort in the face of illness.

And often that is where support groups come in, where people with similar struggles can come together weekly, monthly or however schedules are decided to just vent about their journey and discuss amongst each other our stories. Thus, with this common ground established, friendships are formed quickly as a similar understanding of the illness is spoken for...

Members may come from all different backgrounds, faiths, beliefs, but that is all put aside when the main goal remains focused on supporting one another through the good days and the bad. When one is having a difficult time with symptoms or experiencing a positive progression, support group members as a whole can take part in listening to each person as they face the many scenarios of the illness; nevertheless the atmosphere creates a safe place.

Just feeling as though you have others to open up to is a Godsend. And being able to share advice, stories, laughs and even tears is what the term support is all about.

And chances are the support will not only be limited to the 'meetings,' but go beyond  with lunch dates and get togethers etc...

This sense of security in support with a group of others living similar lifestyles makes it a bit easier to fight through each day as we can confide in one another when times are rougher than others. Knowing that someone is only a text or call away who understands is reassuring especially if you find yourself in a tough spot like in the hospital or unable to attend meetings in person. A random phone call/text to check in or send good thoughts our way in some of our more challenging moments with the disease.

The compassion and genuine support within the boundaries of these groups of individuals is important in the lives of many with these disorders. Often times outside these realms, friendships are not formed on the basis of illness and the lack of understanding/knowledge isn't always the best.

I truly believe when we all seek out a support group or others suffering like us, we are looking for the same thing; non-judgemental support and a place where we feel welcomed with open arms. There is no need to wonder if you truly 'belong' there. And when you leave there, you aren't left holding back tears, but relieved. You shouldn't have to worry about other's making comments about your illness or snide remarks.

That is how I view support in my mind...

This is one of the very first things that I found myself searching for when I was diagnosed back in November of 2007. I was simply looking for someone who knew somewhat how I was feeling and understood the difficulties of these kind of diseases. That's all I wanted and will always be in search of.

And one of the first places I found it wasn't in person, but through social-networking sites like 'myspace' and facebook. I am so very thankful for some of the first sufferers that I met this way. And more recently the ones i've met in person.

I have met so many, that I can't even name names, but you surely know who you are. No words, will ever will ever be enough to say thank you for 'being' there for me, especially in the last year and a half at my sickest.