Age and Chronic Illness

Chronic illness hit me like a tons of bricks just as I was turning 30...literally. It was within days of my 30^th birthday that the migraines, vertigo, and the symptoms of

Gastroparesis hit. Most people that I speak to say “you're awfully young to be experiencing all of these health problems”. I would have to say that I wholeheartedly agree with them; however, I would agree with them whether I was 20 years old or 65 years old! There is no “perfect age” to be saddled with a chronic illness.

There is this thought amongst the majority of people—and that's conjecture on my part—that chronic illness, particularly serious ones, are things that are supposed to only happen to the elderly. It's almost like Chronic Illness is like getting your license, like a morbid milestone of life. It's one that I will GLADLY pass up. Senior citizens have lived long lives, they've experienced things; therefore, the natural progression is then to have illness to occur. It sounds horribly morbid, but, I think that's how most people think life is SUPPOSED to work, whether we say it out loud or not. Sadly, Chronic Illness has no prescribed age that it begins with.

It is estimated that 133 million Americans has a chronic illness, sixty percent of which are between the ages of 18 and 64. These are not including people with cancer, mental illness, or diabetes. My particular disease, Gastroparesis, has an average onset of 34 years of age—though it can occur at any age. I also suffer from chronic migraines. Migraines are usually experienced, originally, in adolescence first and then carried on into adult life; and women have a greater risk of experiencing migraines than men.

Chronic illness has no age discrimination...

Chronic illness will touch your life when it wants to. It pays no mind to your age, to your plans for your life, or how much you will it to go away; it just comes in like a thief and alters your thoughts about everything. It rearranges your thoughts about yourself (you're stronger than you realize, trust me), your thoughts about your friends, your thoughts about your future, the healthcare system, everything! There will be times when you become overwhelmed and want to give up, but you can't! There will be times when you become frustrated with your doctors and the healthcare system and want to throw in the towel, but you can't! There will be MANY times that you hear—well intentioned, but ignorant—statements from friends and family that make you want to scream, but you have to just soldier on.

Advocacy is key in the case of Invisible Chronic Illness(es). Help people understand what it's like living in your shoes...take away the mystic...the stigma...help give your illness a voice! The younger generation can use their tech savvy-ness to their advantage and spread awareness for the disease(s) that they have. Instead of being “whoa as me” turn it into “support me”! Turn peoples' pity into a sense of pride in all that you've accomplished despite not feeling well!

Chronic Illness and Suicide...It's NOT the Answer!

It seems that suicide has touched the fringes of my life a lot recently. And by the fringes, I mean, The Fringes. It's been friends of my friends, friends of my friends through the Internet. Always people I don't know directly. But it still effects me and I still have this innate desire in me for wanting to help those TRULY effected, to cope with the passing of their friend. But it's difficult. 

I know that it's not uncommon for suicide to enter into the Chronic Illness Community. According to The Truth About Suicides, 10% of suicides that occur in Britain are a result of having a chronic illness. 

( http://gu.com/p/3xcmx/sbl) We are in tremendous amounts of physical pain, we experience mental illness, there are various physical struggles that we experience:: chronic vomiting, chronic nausea, fatigue, joint dislocations, fainting spells, dizziness, and the list goes on. Add onto it the feeling of being a burden or failure to your family and friends because you cannot participate in life like they do. You cannot attend functions like you want, there are the frequent trips to the doctor and the unwanted trips to the hospital, the copious amounts of medication. You feel like a thousand pound weight that your loved ones must lug around. 

Sometimes, giving up seems like the most logical thing to do. You'll leave behind the pain, the grief, the struggle, the countless number of pill bottles, the feeling of being a burden.

But it's not the answer..!

As someone who is living, struggling, maintaining with a few chronic and incurable diseases, I KNOW that it is not easy. I know the struggle of wanting to give up. I have been hooked up to those IVs, been to those countless doctor visits, had the feeling of being a burden; but giving up is NOT an option! I get upset and angry, but I chose to turn it around into something positive. 

There is SO much here on earth to live for! Friends, family, work--though I know not all are able to do that. There are volunteer opportunities, advocating opportunities--which can be done online if getting out of the house is too difficult at any given time. Stephen Schmidt says, "Life is filled with lots of certainties, one has friends, a lover, children, family, a task and dreams for a better tomorrow. On the other hand, death is always filled with mystery; we die alone, we leave all those earthly pleasures" (http://www.religion-online.org/showarticle.asp?title=307) We have to hope that tomorrow will be a better day, even if just a little bit. 

My hope and prayer is that no Spoonie will turn to suicide as an answer. Turn to Advocacy instead. Turn to creativity. Turn to God! Turn to a friend. I don't have all of the answers, I really don't, but I know that the answer to suicide is always to get help. If you need to talk to someone please go to http://www.suicidepreventionlifeline.org

A Quick Update

I know I've been quiet as of late and I apologize for that. Part of that is due to writer's block (ugh!) and part of that is due to being just so utterly sick. Since having Alfred turned off I have been quite ill and it's been horrible. Very horrible. 

I guess I didn't realize just how much Alfred was doing for me until he was gone.  It's like losing an old friend...you don't realize how much they mean to you until they're no longer around. I find myself continuously vomiting up anything I put into my mouth, whereas, with Alfred on, it was just a few times a week. 

Ugh! I detest Gastroparesis!

I'm venturing into the Land of Juicing to see if that has any effect on my condition before I ask to have Alfred reactived. I don't know if I'm doing myself any harm or favors by doing this, but it's worth a try. So far--only three or so days into it--I'm feeling zero change, but it takes time. 

I'll blog one day about juicing. 

I appreciate the support and prayers that I have received from around the world via Diary of A Gastroparesis Warrior. My hope is to continue spreading awareness about this horrible disease, get funding for it, and just let EVERYONE know that it's not just a simple stomach flu. 

Rare Disease Day 2015

Today, February 28th, is Rare Disease Day. According to RareDiseaseDay.Org  A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

• A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

• One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

Rare Diseases deserve funding and knowledge and research just as much as any other disease that gets mainstream attention. Gastroparesis is one such disease and just happens to be the disease that I live with. I can personally attest to, not only the lack of funding, medication, and research for this disease but also the overall lack of knowledge and understanding--or even WILLINGNESS to understand--Gastroparesis and the inevitable secondary diseases to follow. I can only imagine the horrors that other Rare Disease Fighters must experience.Logically, one can see why I, along with many others, feel it deserves research, funding, and attention as well. Hopefully, a day like today, will cause people to think about the children and men and women who live with Rare Diseases every day and stop and pray for them, put a few dollars of funding toward their disease, look into ways of helping their families (because living with a chronic, incurable disease is hard and expensive), and thank the doctors that care for these rarities.

Alfred...An Update.

The last week or so has been a whirlwind of ER visits, primary care visits, and surgical visits as well. All in the name of trying to figure out what my left sided pain is, see what's going on with Alfred--my Gastric Neurostimulator--and keep me kickin'! In between all of that was my birthday party and my actual birthday! What a mess!!

My primary care physician (PCP), didn't really think that it was a kidney infection that I had been suffering from, but intramuscular pain/costochondritis. She had me discontinue the Cephlex and try an antiinflamitory medicine instead to see if that would help matters. That still remains to be seen. 

In seeing my surgeon--which I do once a month for check-ups on Alfred--he decided to turn the Gastric Neurostimulator OFF to see if there's really any difference in my health. He said "sometimes patients think there's been no change with the device in and when we turn it off they realize, oh, there has been." So, only time will tell. It's only been 24 hours and I've noticed nothing. We also discussed the kidney infection/costocondritis debate of 2015 and he looked at my labs. He thinks it actually was a kidney infection, but to go ahead and continue with the antiinflamitory medication because it takes a solid week to take effect. 

It's really hard to wrap my head around the fact that the possibility is there that I've failed--yet AGAIN--at another medication/device that could possibly help my condition. But I have to just pick my head up and keep going. I CANNOT give up in this fight against Gastroparesis! I know that I am WAY better off than SO many of my GP Sisters out there, but it doesn't mean that I am any less frustrated. Part of me hopes that I have just been THINKING that Alfred hasn't been doing his job when, in reality, he has been. But it's going to take some time. 

The Future...Don't Fret About It!

Many people that struggle with Chronic Illnesses often worry about the future. They often wonder who will be left to care for them should their condition deteriorate. If they currently live with their parents, as I do, they worry where they will end up should their parents pass away. Or those who are married wonder if their marriage should come to an end due to tragedy or divorce (heaven forbid either one!) where would they go and who would take care for them? Or, those living on their own wonder, if their condition should take a turn for the worse, and there's no family to turn to, where would they go? All of these scenarios are valid, mind blowing, thought provoking things to think about. 

As it is, a person living with a chronic illness already feels like they are a burden to those around them. We feel as though our illness, that is already robbing us of a life, is also robbing our caregiver(s) of a life, too, which is an extra added weight to what we already carry. We often need rides to appointments, help around the house, and help with self-care; help remembering medications, bills, need comfort, and support, all a big task for one or two people to take on. 

I, of course, being the rebel that I am, chose not to worry, at all.

I cannot change my health condition any more than I can change the fact that, one day, my parents are going to pass away. I don't want or plan on that being any time soon, but if I worry over that now, it's A) going to get me nowhere and B) going to give me an ulcer that I REALLY don't need. But I know that I will see my parents again in heaven and I think that gives me solace in that area. I have a brother, several aunts, uncles, cousins, and many friends and though I wouldn't like to burden them with the Caregiver Life, I feel like I could call on them should the need arise. 

I really doubt any Chronic Illness Warrior out there would be left to their own devices by their loved ones. We have to set aside our pride and our worry of feeling like a burden and ask for help when we need it. We have to be willing to open up to those around us and stop saying "I'm ok", when we know, deep inside we are not. We need to stop WORRYING about the future and start making a PLAN for the future. Speak with those you trust and think would be willing to be your next available caregivers. Explain what it all entails. Guide them through your life and see what happens. Maybe then the future won't seem so scary. 

Hopefully my fellow Chronic Illness Warriors will come to find peace in this area of their sickness. Each phase, each area takes all of us time to work through and we all work through it differently and we all come to our own conclusions. This just happens to be mine. Though I haven't outright had a discussion with anyone, I know in my heart of hearts that my family or friends would step in and care for me. It's daunting, I know, but it just takes a little faith. 

The Birthday Girl Has Gastroparesis

Last night was my birthday party and I had a blast! Even though I started my day off throwing up and I felt like I was being stabbed in my side/stomach all day long, I still quite enjoyed myself. When you struggle every day with an illness like Gastroparesis, you take the good with the bad in stride, you just have to. 

Due to my having been in the emergency room on Thursday and not going to work Friday, I didn't have the time or energy to go shopping for decorations. I had big plans for my Masquerade Ball theme, but those all fell through because of my illness. I had to rely on my mom to go shopping for the decorations the morning of my party and hope that she would find things that would suffice. In the end, what she found was great and I just went with the minimalist approach. 

I had set up a little area to be like a photobooth with masquerade masks for people to use and a banner that read "HOORAY". The dining room table held my cupcakes and had flat masks with feathers on them as well as mason jars filled with black and white M&Ms. Like I said, a minimalist approach. 

Every year I cook for my friends and this year, despite feeling so ill, was no different. This time I cooked a chicken and vegetable soup, chili, and a corn cake/bread. Everyone must have liked it because everything was gone pretty quickly! The only thing left behind was some of the soup and I sent that home with someone. 

We played the annual game How Well Do You Know Christine, a quiz-like game comprised of fill-in-the-blanks and multiple choice questions. It's just a silly little game to give my friends a way to win some candy. Then we played Draw A Cake On the Back of A Paper Plate While the Plate Is On Top Of Your Head. Everyone did a fantastic job and it was so hard for me to pick the best one, but I ultimately picked my friend Jessica's because she also wrote "Happy Birthday" on her's. But it was SO hard to chose!

We then had cupcakes--I don't have a cake anymore, there's always too much left over--which are made by the lovely Midnighy Bakery. She put different kinds of masks on each cupcake and they looked fantastic! And they tasted great, too! I only ate half of mine though. 

I so appreciate all of my friends and family that came out to celebrate with me. It means a lot! I think they had a good time...I know that I did. Despite feeling the way I did, I wasn't going to let it ruin my time with my friends!