Interview Patricia Smith

This is the interview that was done with Patricia Smith, she tells her story in essay form. She shares her journey living with Systemic Mastocytosis, Dysautonomia, Dystonia, Eosinophilic, Eosinophilic Esophagitis, Type 2 Diabetes, Degenerative disk disease, scoliosis, and depression. Please be respectful of her and her story told in her own words.

Systemic Mastocytosis http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/basics/definition/con-20036761

Dysautonomia http://www.dysautonomiainternational.org/page.php?ID=34

Dystonia http://www.mayoclinic.org/diseases-conditions/dystonia/home/ovc-20163692

Eosinophilic Esophagitis http://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/basics/definition/con-20035681

Type 2 Diabetes http://www.diabetes.ca/diabetes-and-you/living-with-type-2-diabetes

Degenerative Disk Disease http://www.spine-health.com/conditions/degenerative-disc-disease/what-degenerative-disc-disease

Scoliosis http://www.mayoclinic.org/diseases-conditions/scoliosis/home/ovc-20193685

Depression http://www.mayoclinic.org/diseases-conditions/depression/basics/definition/con-20032977

My dad is from East Tennessee, my mom from Germany. Being a military brat, I’m not really sure where I’m “from” but have lived the majority of my adult life in middle Tennessee. I am 54 and I have systemic mastocytosis as well as dysautonomia, dystonia, eosinophilic esophagitis, type 2 diabetes, degenerative disk disease, scoliosis and probably a few things I have forgotten! I also suffer from clinical depression.

My story is a bit different from many. When I was a child, I was always the one that had to sit down and rest because I was bright red and out of breath. My parents just attributed it to me playing too hard, even though none of my siblings, cousins or friends ever had to take a time out. When I was 12, I wrote in my diary that something was wrong with me and nobody would believe me. I was getting dizzy and passing out (which was a combination of the masto and dysautonomia I know now).

When I was 16, I had my first anaphylaxis. I was working at a theme park and took something I shouldn’t have. My parents did take me to the doctor then, one of which was a cardiologist who said my problems were all because I loved my father more than my mother. I am a daddy’s girl, but I love them equally, and this was a cardiologist not a psychiatrist!

Anyways, they found nothing wrong with me and pretty much believed I was just faking it to get attention. Fast forward three years later, I was working at Vanderbilt University in the clinical pharmacology department. I was a secretary for the head of the department, typing up reports and journal articles.

One day, I had typed up a paper on masto, and told a co-worker that I had all of the symptoms. She urged me to tell the doctor, but after years of being told I was crazy there was no way I was going to mention this to my boss! When I was out sick, she told him and he had me admitted to the Clinical Research Center that day. I spent many weeks after that in the hospital over the next year.

Very little was known about masto then (1981) and I was largely a Guinea pig. My first treatment was 16 aspirin, 8 clorphenirimine and 4 Tagamet a day. Epipens were not prominent then so I had a vial and syringes, which are not very practical. Shortly thereafter, I got married and a year later, had my first child. This is where things veer off strangely. During my childbearing years (1983-1998) I had very little symptoms. I would still shock occasionally and had occasion other issues, but masto was really in the back corner of my mind.

I had a hysterectomy in 1998 and everything came back much worse than it had been. At first it didn’t even dawn on me that it was the masto. Late one night, after a particularly rough time, I googled mastocytosis and put two and two together. Since then, masto has been my daily companion. While it was technically after my diagnosis, my life during those “good” years was pretty normal. I had two children, raised them alone most of the time, very active both with them and my personal life, ran an extremely successful business. I guess life was pretty “normal”.

Now, every day is a challenge. Some days are better than others. I go very much by the “spoon theory” in that you get so much energy each day and you have to decide how to spend it because once it’s gone, it’s gone. Right now, I am not working but hoping to go back to work soon. With me, I am one of the ones that can eat most anything. Some days that works out fine, other days it nearly kills me. And I never know which one it’s going to be. I also for about the past five years, have had totally unexplained anaphylaxis. That being that I can just be sitting in a room perfectly fine and go into anaphylaxis. My biggest triggers are probably smells and pain. If I stub my toe, I can expect anaphylaxis. I hate the out of the blue attacks.

My most recent one was less than two weeks ago. I was sitting in the living room and suddenly started vomiting and big D. I have no idea what caused it but thought I would die right then and there. I have been staying at my sons since then until I can get a medical alert system set up. Right now, a day in my life consists of television and Internet. I am hoping to get back to work, would love to get back into social situations but perfumes and lotions make that very difficult so I tend to isolate myself much more than is healthy.

I tell others living with this that I have been doing this for 35 years diagnosed, 54 years total, and we can support each other and we can get through this together.

The thing that I wish others understood is that I am not my disease. I was seeing a guy for a very short while recently, until he saw me shock. And it wasn’t even a bad one, but he was outta there shortly after. Said he couldn’t handle it. I wish people understood that making plans is hard for me because I feel fine one moment and horrible the next. I wish they understood that just because I look fine does not mean that I am.

I think I have learned to be a more compassionate person. I have learned that life is fleeting and there are no guarantees so you just have to do what you can do, when you can do it, and accept that you have limitations (that has been the hardest to accept). I’ve learned that I am not alone in this illness and have met some of the most amazing friends through it. And although this disease sucks and will probably one day kill me, I would not trade the friends that I have made for anything.

Thank you for sharing your story with me. You are a brace woman and I admire your strength. Thank you for sharing your story with me.

Hopeful for you always.

💗Anna

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Interview With Lyle

My latest interview was done with Lyle. Lyle is terminally ill he has been diagnosed with the following diseases, terminal pulmonary fibrosis, dermatomyositis, small fiber neuropathy, depression, and anxiety. Please be respectful of him, his journey as you read his interview in essay form.

Learn about terminal pulmonary fibrosis http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/pulmonary-fibrosis/

What is dermatomyositis https://rarediseases.org/rare-diseases/dermatomyositis/

Small fiber neuropathy http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html

Depression and anxiety https://www.adaa.org/understanding-anxiety/depression

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My full name is Lyle Sodapop Romans. I am 23 and I have terminal pulmonary fibrosis, dermatomyositis, small fiber neuropathy, depression, and anxiety. I’m dying but it’s ok.

When did life change for you?
My life changed for me when I was in high school from freshman year all the way to the end of senior year, I was extremely athletic. I was also in sports, track and field, I only thought I was getting tired because of the workouts that our coach told us to do. But to my surprise it wasn’t. I went in for a physical check up and my doctor was very confused couldn’t believe the results that were showing I lost 80% of my lungs it’s because of genetics 1/100000000 chance I guess, I won.

Before my life is very different. I actually could sit still I would lift weights as much as I could until my arms gave out, and then the next day I would do exactly the same. I worked for all the strength that I gained also used to love dancing I was a hip-hop breakdancer. Awesome a thespian aka a serious performing arts student.

I had a hard time answering this question seriously because of my terminal diseases, there’s really nothing I can do on my own from getting dressed to eating food. Are used to do many motivational shows but for people who are terminal we continue to get worse over time so in the day I get pushed to my room and I turn my pain into passion by using the talent that I have left I sing, do you motivational speaking online, and just try to stay positive each day.

The most challenging thing because of my diseases is that I lost all independence and now fully depend on others.

For your question yes I find it extremely hard to keep up with others the most I can do now is play with my brother and sister for five minutes and then I have to rest for a few hours.

To others who have the same diagnosis (even though it’s an extremely rare disease) as long as we live Life to the full list each day and every day then there is no regrets. People look at us as inspiration but to be fully transparent we also are just human beings. And that there are happy days and they’re absolutely sad days but as long as you’re truthful it is so much easier to connect with others.

That was an amazing question many people without diseases or terminal problems always think that by looking at us because we look a little different that they should give us sympathy. The thing for me I might have these extremely rare diseases but don’t treat me as if I’m someone that is sick or you should be careful of the words you say. Treat me as you would treat everyone else because I figured out that people with diseases and that are dying it’s natural we are all going to pass away so instead of babying me or taking it easy treat me as a fun loving outgoing person that I was before all of the medical problems are not victims were victorious.

Well my journey I’ve learned that a lot of things that were showing in front of me I took them for granite. I always stop by working out as much as I could and getting a strong as I could what is my purpose on this earth. Seeing this is what’s different though I always wanted to be a famous actor that would be able to make people laugh and enjoy their day but once I’ve learned that there’s no helping me at all and all these tests just go to continue proving I’m dying. It’s OK my life maybe ending but the legacy I have left behind in my motivational’s speaking show, News papers, TV, all of those is what’s going to still be here after I’m gone. So my physical body will be gone but my presence that is around to continue to make people happy will always remain. And that I am so much happier now than I ever was as a bodybuilder. Flush will deteriorate but what remains is what I have done everything I can to help as many people as I can remember to smile, my personality, my spirit, don’t remember a fragile painful person that is dying.

Yes from the journey of life that I’ve been on this was my purpose all along to be an example to show people it doesn’t matter what you’re losing that life is everything around you, you are a miracle. Be happy that if you wake up tomorrow and her breathing and the sun is still up then you still have time. Because tomorrow is never promised so we must enjoy the time that we have left here and once I do die that it’s not goodbye its see you later.

Lyle you are indeed victorious. Thank you for bravely sharing your story, I love the honesty that you have conveyed in your writing. You are an inspiring soul and I am blessed to know you.

You can check out Lyle’s YouTube channel here https://www.youtube.com/channel/UC-G8s3BF7-7tmk_IRTQGTWA

Hopeful always.

💗Anna

Shine Light On Rare And Complex Illness

img_3828I’m sure some of my followers don’t appreciate me posting things about illness all the time. Living with something this debilitating, it is destroying your life and your livelihood if you don’t speak out about it no one will care and no one will do anything. Man you know me from the posterior there about my jury living with what I live with in the amount of things that I deal with you have no idea. My life is something that can simply not be summed up in words.

The amount of things that I face and a daily basis dehydration palpitations passing out..? Dislocations partial dislocations increasingly master pain the complications a feast for my diseases. Nothing could explain it nor fully hope you to comprehend what it is like for a day in the life of me. I could do my best to explain it through the casual post about a dislocation however that stuff happens to me a lot.

Everything that I live with is what it is and is in trouble and fixable not possible to even moderate

To raise awareness people must come forward share their stories. Let others know what rare complex diseases are. Shed a light on something that is so hard to explain most doctors are baffled. If this is not done it won’t change. Things will stay the same and people will continue to be passed over as drug seekers. When in fact the pain of a dislocation even with EDS can be extremely excruciating.

When people see chronically ill people post on the Internet and their post tend to resolve around them being unwell. This is what a life with chronic illnesses like.  No we are not doing this to the attention seekers. If you think that, it is your thought and you are welcome to have it. But know that chronically ill, and invisibly ill people for the stigma. This is why  many of us have started to talk about what our lives are like daily. We are scrutinized, many times viewed as drug seekers by doctors.  Being told that we are attention seeking by sharing our story.

I honestly don’t think in my mind that it is attention seeking, it is something that is used to raise awareness for multiple diseases invisible illnesses important this is important. Every disease no matter how big or how small or how many people are affected by it they are all important. Every single person living is important.   So why is it that instead of building each other up return each other down?   Please think the next time you think about  Rolling your eyes at someone’s post, commenting negatively,  or view someone is attention seeking, simply think this,  what if it was you sick with an invisible disease? What do you still post that negative comment

It’s easy to say if  I was the one that was sick I wouldn’t be negative, talk about it, posting it online. I would probably still continue to work full-time and do everything that I love because no Disease could slow me down.  In actuality you have no idea how you would deal with something until you were truly faced with it. It is easy for any of us to say how we would behave in any situation.

Speaking from the point of you that I am speaking from I have had eight diagnosis of disease, each time there is something new diagnosed I go through the grieving process again. This is a natural thing allow yourself time to grieve.  I have had people comment that I am broken as a person.  I may be missing two organs but that does not make me broken.  I am woman a sister, daughter, wife,  and will never be a mother.  My path I have excepted it.  I have excepted  my journey is differentiated from other people’s . Have you excepted your path? Have you excepted your own journey?

In my opinion, I support people posting online about their struggles with chronic illness, genetic illness, mental illness, invisible illness, genetic illness, and any sort of illness.  If we do not talk to one another and connect, how can we get better mentally? Hope is something I will always have no matter how sick I get.

I believe that it vital to raise awareness for rare and complex diseases. If you are advocating to raise awareness keep it up, you can do this. You are a fighter. Let’s make a difference together. It’s like Ghandi said, “you must be the change you wish to see in the world.”

I am truly lucky and blessed to be living life now. I survived cancer, I fight EDS, POTS, MCAS, perniosis, Raynaud’s, pancreatitis, jaundice, a bleed, and I will never give up hope.

I truly have hope that collective voices can make a difference. Sharing your story is important not only for you but for others. Warriors and fighters of rare illness you are not alone. Us rarities need to stick together.

Hopeful forever and always.

💗Anna

Interview With Pashondra James

This is Pashondra’s story as she shares what is it is like to live with EDS hypermobility type and vascular cross over type. She also talks about the following POTS, Dandy Walker Syndrome, Ménière’s disease, Mitral valve prolapse, Raynaud’s, and migraines. Please be respectful of Panondra and her story.

What is Ehlers Danlos? http://ehlers-danlos.com/what-is-eds/

What is Vascular EDS? http://ehlers-danlos.com/vascular/

What is POTS? http://www.potsuk.org

Dandy walker syndrome http://neurosurgery.ucla.edu/dandy-walker-syndrome

Meniere’s Disease http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251

Mitral valve prolapse http://www.mayoclinic.org/diseases-conditions/mitral-valve-prolapse/basics/definition/con-20024748

Raynaud’s http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916

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Where are you from tell me a little bit about yourself? What is your name, age, and disease/invisible illness/mental health? My govt name is Pashondra James 43 years old and suffer from Ehlers Danlos III as my primary illness along with POTS, Raynaud’s, Mitral valve prolapse, dandy Walker syndrome, migraines and severe Ménière’s Disease.

When did life change for you? When did life change for you? There are a few dates that had a significant impact on my life June 2, 1994, and August 13, 2004. My world completely changed March 23, 2011 which was my last day of work. I was so scared to file for disability that I waited 3 months. I finally applied June 7th 2011 and was so elated that I got my approval on July 12th, 2011. I was truly blessed to be able to just focus on my health. The day I was no longer able to drive alone greatly changed my life. Life continues to change for me…the never ending story!!

What was life like before diagnosis? What was life like before diagnosis? Life was great, full of hard work, and adventurous. Life was filled with trips out of the country and lots of road trips. I worked hard so I played hard and really enjoyed the space I was in prior to diagnosis. I was always doing volunteer work with the family court system which I thoroughly enjoyed. My symptoms were in full force by the time I got my diagnosis. My life went from being on the go constantly to moving in slow motion if at all.

How has your diagnosis changed your life? I’m no longer this carefree woman who can just pick up and go whenever I got the feeling. If I do anything that I enjoy I will spend the next week bed bound paying for my little bit of fun. I have to plan everything to the T. I have to take in account making sure I have enough medications, my joint braces, I have to know in advance how close the nearest hospital is to my destination, I need to make sure the person I’m spending time with knows what to do if something happens or if I have a flare. There is just so much to keep up with that the stress of it almost Keeps you from venturing out. I loved spending time with friends shopping and enjoying life but now I can’t walk long distances without dislocating my knees or ankles it is certainly a chore. One of my passions was to travel out of country and having to stop this has been a major change for me. I no longer drive alone and most times I have someone else driving which is a great help. I spend a lot of time at the doctors office and in the hospital a lot. I have missed many family functions and events due to this illness. It has greatly impacted my life!!

Please describe the best you can a day in the life of you? Wow how do I answer this question? My days are vastly different. I suffer from PAINSOMNIA so I can be up all night and sleep during the day. Once I wake up depending on how I feel It can take a while to get me started. I will normally get up and take my morning medicine with a little breakfast and see what I need to do for the day. If I don’t have any appointments then I will check my email and interact with my support groups. I mentor a few young people and it means so much to me that in spite of my disability I still have so much to offer. If I have to go I will make sure that all the errands are done in that one trip out. I love to take naps bc I feel like they give me that added push to get thru the rest of the day. I love to watch documentaries and doing lots of research on my illness.

What was/is the most challenging thing you have faced because of your diagnosis? I think the challenge for me was actually coming to terms with everything that came with the diagnosis. It was a bittersweet realization that I passed this illness on to both my children and it was this reason that caused them to pass away during birth. I say bittersweet because I find solace in knowing that they will not have to suffer and fight for their lives as I do. It was and is hard knowing that I would never get pregnant again so I mourn the life I would have had. It was challenging and very hard Leaving corporate America 3 months after diagnosis because I was scared of what would happen next, learning that most doctors that I have seen had never heard of this illness so it took a while to get my care team available. One thing that is extremely challenging everyday is looking perfectly fine while fighting an invisible illness and trying to explain it to people.

Do you find that you can keep up with others? There is no way I can keep up with others. We might start out at the same pace but at some pony I’m going to slow down because of my joints. If I have on my knee braces it makes it hard for me to keep a fast pace bc they are heavy. I’m thankful I have people in my life willing to just mosey along with me even if it’s a slow day and I’m thankful.

What would you tell others living with your diagnosis? That somehow our life matters and someone’s life will be better bc of us. To know they are not alone, Their pain is valid and that they are important to me. To remember God has a purpose for our trials and pain. I want others to know that we are so much stronger than we ever thought we could be. I need them to know that they are their best medical advocates and to trust their gut!

What would you like to tell others that don’t live with a similar diagnosis? I want others to know that we would never choose to live this life and we are doing the best we can. We want to be invited but not to take it personal if we can not attend. I want people to know that we are not lazy and that we fight for life every single day. Sometimes all we need is your presence, for you to believe in us and to learn about what we are going thru.

What have you learnt on your journey? That I have amazing strength and incredible compassion. I learned that I AM ENOUGH! I learned that having this illness does not mean I can not have a life. Living this chronic illness life has allowed me to learn who the real people in my life are and I’m forever grateful.

Is there anything you would like to add about your journey? This journey has been a lifetime in the making! As of December 14th I have had 18 surgeries fighting for my life and I’m still here. I have this illness but it does not have me. I’m a survivor that’s all I know how to do. I believe somehow my life matters and someone’s life will be better bc im in it. I have been blessed with children that God sent my way and I’m forever thankful. God has a purpose for our trials and pain. I’m thankful that thru it all my faith has remained strong.

Thank you for sharing your story with me and with the world. You are an inspiring lady and it is a pleasure to know you. You are a survivor. You are brave! Take care of you.

Remaning hopeful always.

💗Anna

Low Histamine Pancreatitis Diet Recipe

img_3809This blog post is dedicated to all of those living with mast cell disease and Pancreatitis/pancreatic insufficiency. Now if you read this recipe and you don’t have these diseases you may find this very bland. That is the point. Living with pancreatitis when in a flare having a bland diet is important.

What you will need

One cup of dried pinto and navy beans (1/2 cup of each)

1/4 of an onion mince

3-4 mince cloves of garlic

1 butternut squash

Pinch of salt

The way I cooked dried beans is I take them and soak them in water. Measure out 1 cup of the Pinto and navy beans. Then rinse them in Coldwater, drain this water. Then cover the beans in 3 cups of water,  you can then leave the beans in a pot for one hour to soak.

When the beans have soaked for an hour drain the water from them. Add 3 cups of  fresh water to the beans in pot and put of the stove, bring this to a boil. Once they have reached a boil then off and let them simmer for 1 hour.

Remove butternuts outer shell. Cut butternut squash and cube. Mince garlic and onion. Add 3 cups of water to a large pot dump in the butter not squash garlic and onion. Bring to a boil, then let simmer. Check squash periodically to see if tender, when the squash is tender enough use a potato masher to mash the squash in the pot.

After the beans have soaked for an hour you can drain them and add them to your squash. Let stand 5 minutes before eating.

Wishing you all happiness, health, and hope always.

💗Anna

Interview With Bill

This is interview was done with Bill. This is his stroy in essay form talking about what it has been like to live with SCFE, Quervain Syndrome, osteoarthritis and iliopsoas impingement. Please be respectful of him and his story.

What is (SCFE) slipped capital femoral epiphysis find out here http://orthoinfo.aaos.org/topic.cfm?topic=a00052

Quervain Syndrome http://www.assh.org/handcare/hand-arm-conditions/de-quervain-syndrome

Osteoarthritis http://www.arthritis.org/about-arthritis/types/osteoarthritis/

What is iliopsoas impingement learn about it here http://www.lower-back-pain-answers.com/iliopsoas.html#axzz4VV6m8CrP

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My name is Bill Fuller. I’m 57 years old and live in Childers, Queensland, Australia – a small rural community of approximately 2000 people. I am a happily married man with 4 adult children and 3 grandsons.

I had a varied work life, working in mining, retail, education and horticulture before being employed in a maximum security jail for nearly 20 years.

As a child I suffered a slipped capital femoral epiphysis (SCFE) of the left hip and had 3 pins inserted into the joint which were removed about 18 months later. This had little affect on me or my mobility and I played many sports throughout my life. I suffered minimal discomfort in the left hip which was treatable by over the counter pain killers.

Over the years the pain did get worse causing mild inconvenience to my lifestyle.

One Monday morning in July 2013 I will never forget: I got up for work and could hardly move – it felt like someone was stabbing my hip and thigh with a red hot poker. The pain was the most intense I could ever remember. I attended work and one of my work colleagues wanted to call an ambulance for me, which I declined.

I attended my doctor that afternoon and was sent for X-rays which revealed severe osteoarthritis of the left hip and I was referred to an orthopaedic surgeon for assessment. I continued to work somehow until 4 December 2013, when I left my workplace for what turned out to be the final time. I was by this stage using elbow crutches full time, except at work, as I was not allowed to take them into a maximum security jail so I managed to slowly limp around while working. Further X-rays at that time revealed the hip-joint had collapsed and I was limited to using underarm crutches and was totally non weight bearing. By this stage I was taking high doses of narcotic painkillers to get through my days and was scheduled for a total hip replacement in July 2014.

Surgery was done however the pain, while less than prior to surgery, remained. I could also feel movement in the joint and when riding an exercise bike a discernible ‘clicking’ could be heard. Further X-rays showed nothing abnormal so I was referred to another orthopaedic surgeon for assessment. After more testing it was assessed the cup of the implant was loose and I was scheduled for a hip revision in June 2015. The outcome of this surgery also left me with severe pain in the hip and thigh and also shortened my leg by approximately 5cm or 2″. I also have nerve damage called iliopsoas impingement which causes severe spasming of my left leg and I remain non weight bearing, using underarm crutches or a wheelchair around home or when going out for any period of time.

Due to my long term use of crutches I have developed de Quervain Syndrome (a tendinitis of both thumbs) and the tendons of both my hands and wrists have been severely torn (described as shredded by the specialist) and I wear thermoplastic splints on both hands which immobilizes my hands, wrists and thumbs. I wear these for 23 hours a day to manage pain and due to my ongoing use of crutches I will wear these forever.

I have now been classified as totally and permanently disabled and continue to take narcotic painkillers on a daily basis.
My life has changed dramatically. I was always busy, building something or fixing something, taking walks with my wife, playing with my grandsons, being involved in the community. Now we cannot plan anything: it depends on whether I have slept during the night (3-5 nights a week I am unable to sleep due to spasms and discomfort) and the amount of pain I am in which dictates the pain killing medication I take. On a good day I can go shopping, out for lunch or a picnic with family members. On a bad day I will usually sit in my wheelchair or sleep.
At times I look back on my journey to disability and find it surreal, hard to imagine this has happened to me, I have friends who have had hip replacements and been back at work within 4 weeks. It’s so hard not to ask ‘Why me?’ but life goes on and for all the difficulties and challenges I face on a daily basis I try to remain positive. My wife and I have purchased a 4wd and caravan (trailer) and plan to travel around Australia later this year. We decided to do it while we can. This in itself requires so much planning due to my lack of mobility but I’m sure we’ll get there.

One of the main lessons I have learned is patience: things I can do I do a lot slower than previously, I’ve learned to adapt to my disability and will continue learning till the day I die.

Thank you Bill for sharing your story. Wishing much hope always.

💗Anna

Interview With Angela

My interview with Angela. She talks about her journey living with Ehlers Danlos, Hyperandergic POTS, and Interstitial Cystitis. Please be respectful of her story told in her own words.

What is Ehlers Danlos find out here http://ehlers-danlos.com/what-is-eds/

What is Hyperandergic POTS find out here http://myheart.net/pots-syndrome/types/

What is Interstital Cystitis find out here https://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx

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Where are you from tell me a little bit about yourself… I’m from st. Louis Missouri that’s where I was adopted I don’t know who my biological parents. Finding out my medical history took forever. I was twelve when I started having symptoms and didn’t get diagnosed until I was 37.

What is your name, age, and disease/invisible illness/mental health? My name is Angela Goering, and currently 40 years old living with ehlers-danlos Hyperandnergic  POTS and Interstitial cystitis.

When did life change for you? I was twelve when I remember starting to go to the doctor but I was nine when I remember having nightmares, i started trembling, racing of my heart and not knowing why, just feeling like something was wrong.

What was life like before diagnosis? Before the diagnosis had several doctors tell me different things were wrong and give me different medications that never seems to work.it came to a point where I believed everyone thought something was wrong with my head, it was a mental condition, I even started to believe I was crazy. When I finally met my rheumatologist at 37, after I went into atrial fibrillation, I found out I have ehlers-danlos. even though it’s a rare condition and many doctors don’t know what it is I’m just happy to have a diagnosis. I’m not crazy. there is something wrong with me.

How has your diagnosis changed your life? For one thing I now have a diagnosis that gives me a direction therapies I can try. And it gives me a prognosis some patients since we’re all zebras no one really knows or prognosis. It’s made me not take life for granted I’m in pain everyday my pain level is always at 7 on a good day but I try to get out of bed and I try to enjoy it when I can. And I post pictures of my Great Days because I know no one cares about my bad ones, no one’s around for those

Please describe the best you can a day in the life of you? Typically I wake up I take my medication for the morning. I stay in bed and wait for it to kick in possibly putting makeup on my face, watching TV, typically it can take anywhere from 1 to 4 hours to get out of the bed. If I’m up stairs by 3:30 to take care of my children when they get off the bus I’m happy. I like to make them dinner. Go to any school for sports events when needed doctors appointments and physical therapy and in bed or on my recliner all the free times.

What was/is the most challenging thing you have faced because of your diagnosis? Having to use a walker before the age of 40 especially in front of my children

Do you find that you can keep up with others? Some days but definitely not in everyday activities

What would you tell others living with your diagnosis? I’m sorry. I know it feels like no one understands what you’re going through and the doctor seemed uneducated but hopefully you’ll find one that does because one gives you hope. And if you can find a group of people that have your condition that’s the best kind of community to give you the compassion you need to get through this disease. it’s how I make it everyday

What would you like to tell others that don’t live with a similar diagnosis? People see us and think we look healthy because on the outside we do but the inside of us is literally crumbling apart. don’t judge a book by the cover. don’t say well maybe one day we’ll find a cure because our doctors don’t even know what the heck are disease is. we just want people to be compassionate on the days when were in pain and sometimes give us a hug and not say anything at all. just understand that sometimes saying it sucks and I’m sorry that you have to go through this is all we have to hear.

What have you learnt on your journey? Be humble ,be kind, be compassionate, and everyday is a blessing!

Is there anything you would like to add about your journey? I wish there were more people that had an understanding and awareness invisible diseases if we could raise the awareness like the awareness of cancer it would be amazing thank you for listening to our story it means the world to me.

Thank you for sharing your story with me and with the world. Here is to hoping there is more understanding and awareness for invisible and chronic illness.

Hopeful always.

💗Anna

Interview With Laura

This is Laura’s story living it’s NEADS, PTSD, Lupus and EDS. Below are links to help you learn more about what she lives with. This is her story in her words please be respectful.

What is a EDS http://ehlers-danlos.com/what-is-eds/

NEADS https://www.epilepsysociety.org.uk/non-epileptic-seizures#.WHMQdXT9ef0

PTSD https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml

Lupus http://www.mayoclinic.org/diseases-conditions/lupus/basics/definition/con-20019676

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Where are you from tell me a little bit about yourself… . Love music (especially Michael Jackson, two tattoos to date of that beautiful man!) and animals (cliché I know). Married, no children and two jobs, food safety at a factory and singer 🙂

What is your name, age, and disease/invisible illness/mental health?
My name is Laura but I go by a stage name of Luna Nightingale, I’m 28 at this moment (29 in June 2017), my issues being:
NEADS (Non Epileptic Attack Disorder) PTSD, Lupus and Ehlers Danlos Classical/Hyper-mobility.

When did life change for you?
You know the sad thing? I can’t really remember a time I wasn’t this way, although it is steadily worsening.

What was life like before diagnosis?
A round trip of doctors, raised eyebrows and rolled eyes as “she’s sick again”, “it’s in your head” etc rang out through both school and work, from adults and children.

How has your diagnosis changed your life?
Sadly not as much as I had hoped before I knew the cause, although I can stand firmer in the knowledge that I am not imagining these things, knowing there is no cure and the continued dubious looks can be tiring.

Please describe the best you can a day in the life of you?
If I’ve slept it’s starting out ok, as generally I don’t, followed by putting whichever joint/s have escaped their moorings back into place. A round of painkillers takes the worst of it away, down to a tolerable level but never gone, then its off to work, whichever
job that may be. Throughout the day I’ll relocate various joints that dislocate, from the minor of fingers and toes to the more serious hips and ribs and continue on the pills. When the job is done I will normally crawl into bed for as long as I can, not to
sleep but to try and ease the ache of just trying to stand for 9hrs before its time to sort dinner. Then immediately after its shower and bed to start again.

What was/is the most challenging thing you have faced because of your diagnosis?
A lack of knowledge within the medical community means I find myself using half of a hard-to-get appointment just explaining what the disease is with regard to EDS, long before I get to the actual problem.

Do you find that you can keep up with others?
Not often no

What would you tell others living with your diagnosis?
Be prepared, its a fight every step of the way from disbelief to outright incredulity when you state how you live with dislocations, seizures etc but there is no cure, just remember you are not crazy.

What would you like to tell others that don’t live with a similar diagnosis?
First, believe them. Yes, I know, you hit your elbow that time and it didn’t dislocate, and yes I know you saw on Casualty that dislocations leave you screaming in agony so no WAY can the person standing in front of you ACTUALLY have just dislocated their shoulder and with a slight wince have popped it back in, and of course all seizures are epileptic in nature and controlled with a pill, because Holby City said so. But that is life for some people, myself included, and it’s hard enough without the disbelief and suspicion.
Second, I know you’re trying to help with this diet and that herbal pill and that this bath salt helped when you pulled a muscle, but please, PLEASE don’t. Trust me if you’ve heard about it I have tried it and more than anything it just comes across condescending which I know is not the intent.

What have you learnt on your journey?
That a diagnosis doesn’t mean freedom, it can be a tangled nightmare, but that I and many others are a lot stronger than I ever imagined possible.

Is there anything you would like to add about your journey?
It’s only just begun, some days I can’t face the idea of more fighting, but I hope that the next step will be the one.

Thank you for sharing your story with me and with the world. Wishing you the best, and much hope.

Hopeful always!

💗Anna

Interview With Heather M.

This is the interview of Heather M. She shares her journey living with Fibromyalgia, EDS, autism spectrum disorder, delayed gastric emptying, Raynaud’s, GERD, MCAS, and dysautonomia. Please be respectful of Heather and her story as she shares her words.

Learn about Autism spectrum disorder here https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Delayed gastric emptying (gastroparesis) information  https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis

Raynaud’s info can be found here http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916

What is GERD? Find out here http://www.mayoclinic.org/diseases-conditions/gerd/basics/definition/con-20025201

What is MCAS? Find out here  http://ehlers-danlos.com/2014-annual-conference-files/Anne%20Maitland.pdf

Learn about fibromyalgia here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Learn about EDS here http://ehlers-danlos.com/what-is-eds/

Learn about Dysautonomia here http://www.medicalnewstoday.com/articles/76785.php#Autonomic_dysreflexia

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Where are you from tell me a little bit about yourself…

I’m from Victoria BC, and have lived here most of my life. I enjoy creating art when I can, and spending time outdoors when I am feeling up to it.

What is your name, age, and disease/invisible illness/mental health?

Heather M, 30 years old. I am diagnosed with Ehlers Danlos Syndrome, Fibromyalgia, delayed gastric emptying, GERD, Raynaud’s, and Dysautonomia. I also suspect I have MCAD and an Autism Spectrum Disorder.

When did life change for you?

Growing up I was always different from the other kids. Weaker, slower, less co-ordinated. I had a tendency to injure my joints, and I had very little vision in my left eye, which left me without depth perception. I often had pain and stomach aches but I was told those things were normal. I had frequent bouts of bronchitis and sinus infections, but no one thought anything of it. My childhood was almost normal. It certainly seemed normal to me

The first change in my health took place around age 15. My daily pain was increasing, I was fatigued, I had headaches all the time, and muscle spasms in my neck and shoulders. I thought all of this was normal. My mother, from whom I get my genetic illnesses was still undiagnosed with anything at that point, and the fact that she had these symptoms too made me even more certain they were just a part of life. Everyone gets headaches, right?

I was also dealing with social and emotional difficulties. I believe this was a combination of an undiagnosed Autism Spectrum Disorder and the repercussions of trying to keep up with my peers while pushing past severe pain and fatigue on a daily basis. (I was also a survivor of sexual abuse at age 11/12 which probably played its part too)

Life was overwhelming. One day I started to cry and I couldn’t stop. I cried everyday for about 3 weeks. I started skipping class because I couldn’t stop crying and the other students teased me for it. I felt all alone. I reached out for help to my family but they thought it was typical teenage hormones and they figured I would get over it.

Eventually the stress got the better of me and I started pulling my hair out. I was hospitalized in a children’s mental health unit.

The real tragedy here is that part of my illness is a severe sensitivity to medications. Psych meds in particular, cause an adverse reaction in me.

So they treated me as purely a psych case, and I became one. The more they treated me, the worse I got. The medications caused a psychotic episode, among other things. The next 6 years of my life were a blur of medications, hospital safe rooms and suicide attempts. At some point during that time I was diagnosed with Borderline Personality Disorder.

I managed to level out around age 22 after my millionth med change, my “mental illness” improved pretty dramatically (there are a small handful of psych meds I don’t react to).

So there I was, no longer in a state of psychosis from the wrong meds, trying to figure out how to move forward with my life. Things weren’t easy for me, I was still in severe pain, and my daily fatigue was a battle, but by far my biggest barrier at that point was that I believed I was mentally ill. At that time, I didn’t know about my med sensitivities, so the erratic behaviours, the psychotic episodes, the BPD, I believed that was all me. It took some time to get past this.

By this time, I started mentioning my pain and fatigue to my Dr. I was told it was common for mental illnesses to have physical manifestations and it was shrugged off.

Life continued, I went to university, and then got my dream job as a Community Support Worker. My health continued to be a major struggle. I was pushing myself way to hard. My health began a steady decline. I was diagnosed with Fibromyalgia  in 2011. My mother had been diagnosed with Fibromyalgia a couple years prior, so even though I didn’t quite fit the diagnostic criteria, a rheumatologist  decided that since my mother had it, I probably did too.

As my health declined further, doctors told me it was fibromyalgia and or depression causing my symptoms, but I never felt that fit. I was frequently off work for months at a time. Every time I returned to work, I took a job with fewer hours, and fewer physical demands. I was receiving PWD income at this point, but still determined to work as much as I could.

Throughout all this, I searched for answers, I underwent tests, I googled autoimmune diseases. My GP continued to insist it was all due to Fibromyalgia and depression. Eventually, I decided to accept the diagnosis and stop looking. Then one day I was reading an article about diet and Fibromyalgia, when I came across a brief mention of Ehlers Danlos Syndrome. Which, like most people, I had never heard of.

My life began to make sense. I mentioned EDS to my GP. She discouraged me from seeking diagnosis, saying that even if I did have it, treatment would be symptomatic, same as it is for fibromyalgia. I accepted that for the time being, but I joined an online support group for people with EDS, and I continued to research it. 3 months later I went back to my GP and insisted that I be referred to a geneticist. I explained why diagnosis was important to me and that I needed to be able to make informed decisions about my health. She agreed and the referral was sent. At the time I was told the wait would be about a year, but it actually took two years. By the time the appointment came around I was finished with work entirely. Retired at age 29.

The long awaited appointment was a huge disappointment. The geneticist was not up to date on the current diagnostic criteria. He was dismissive and cruel. He said I probably didn’t have EDS, and even if I did, there was nothing to be done for it. He recommended psychiatric help, and sent me on my way. I was crushed. A few months later, I scraped up the money to travel, and saw a respected geneticist in another province (with extensive experience with EDS) who diagnosed me right away.

Then came the grieving. The Dr in Alberta confirmed my fears that it would be detrimental to my health to have children. He confirmed that my condition is progressive and incurable. He explained that at this stage I was “wired for pain”, and the chances of ever finding effective relief were minuscule. Even though I was relieved to get the diagnosis I had fought so hard for, the grief was overwhelming.

So, to make a very long answer much shorter, the first big change occurred at age 15. Then my 20’s were a series of big changes. Changes in my pain levels, my level of functioning, my relationships, my day to day life, and changes to my hopes and dreams for the future.
What was life like before diagnosis?

Confusing! Life before diagnosis was confusing. I didn’t understand why I couldn’t keep up with my peers.

It was also often very scary, because I didn’t know what I was dealing with. For example, I have bouts of something called costochondritis. Costochondritis is pain caused by inflammation of the tissues between the ribs, and is very common in people with EDS.

Before being diagnosed with EDS, these episodes were much scarier because they feel like a cardiac event. But now, I can recognize and explain these symptoms.

How has your diagnosis changed your life?

I understand myself better. I am less angry with myself than I used to be, at least my body has good excuse for treating me so poorly!

Please describe the best you can a day in the life of you?

I wake up with a bad headache. My body feels stiff and heavy, I can hardly move. I use my hands to get my legs moving in the morning, since they won’t move of their own accord. I haul myself out of bed, after a brief struggle, and head to the kitchen. I take my ice-pack head wrap out of the freezer and put it on. Then I take my meds and supplements. I am exhausted from unrefreshing sleep so I check the coffee pot. If I am lucky there is a little left over from yesterday and I can heat up a cup in the microwave.

I sit or lie down on the sofa for 20 minutes or so, then I get up and make some coffee. While waiting for it to brew I do a little cleaning in the kitchen. I usually get the dishwasher at least half way loaded or unloaded before I have to sit down with my coffee.

Let’s say today is a day where I have an errand or two to do, and I’m feeling up to it. So, I pick out some clothes. I decide whether or not I should wear compression socks. Do I feel like my BP is leaning towards high, or low? If I’m not sure, I check it. Then I rummage through my laundry to find something clean-ish, and comfortable. I set down all my clothes next to me on the sofa, and rest for a few minutes.

Then I get dressed. Once my socks and pants are on, I get up and grab my pain cream. I have a special long handled applicator, to help me put it on. I cover my entire back, neck and shoulders with A535, then I can finish getting dressed.

Next, I assess my needs for splints and tape. Driving always requires wrist supports of some kind, usually my braces. Sometimes I need coflex tape for my thumbs, or KT tape for my elbows or neck. Some days I wear finger splints if I feel like I need them. I can’t drive with a neck brace on but I usually bring it with me if it is a bad neck day.

I don’t usually eat solid food when leaving the house. I can deal with nausea, vomiting, and GI distress at home, but it is a big problem if I am out running errands. But if I don’t eat, I get weak, shaky and dizzy, so I bring some liquid nutrition with me. Usually I make a nutrition shake, and I also grab a can of coconut water (helps keep my blood pressure stable), and my water bottle (I am easily dehydrated).

I fix my hair (I wear it short so this doesn’t expend much energy), and brush my teeth. Then, it’s time for the boots, ugh! I have a love hate relationship with my boots. Lacing them up is the most tiring part of my routine. I have to lace them very tightly, as they help to hold my wobbly ankles in place and prevent injury.

Next, I choose a cane that matches my outfit (I design custom canes, so I always have lots to choose from), and I’m ready to go.

Driving is becoming increasingly challenging, and I suspect there may come a day when I need to give it up. But for now, it is manageable, and it gives me freedom, which is something I don’t have an abundance of in my life, so I love it. My family has gifted me a car, which I am very grateful for.

I can generally manage one or two errands without assistance. I have a parking placard, and I keep a walker in my trunk. Most places I visit have automatic doors, or buttons for the door, which is awesome, as I find heavy doors very challenging. I get worn out easily, so often I will have two errands planned, but have to prioritize, and head home after the first one.

Arriving home is generally the hardest part of an outing, as I am exhausted and my pain is intense. I have to back in to my parking space, which is extremely painful. I have to carry in any items that I purchased. The fire doors in my building seem to weigh a thousand pounds.

Then the boots. I have to undo the laces almost all the way. If I try to get lazy and pull them off while they are too tight, I will injure my ankle.

I would love a cup of tea but I haven’t the energy to make it. I grab an ice pack from the freezer and lie down on the couch. I am hungry but I can’t move.

Netflix and Facebook for the rest of the day. If I find the energy I spend 10 or 15 minutes cleaning in the kitchen, or change the cat litter. At some point I manage to fix a simple meal or snack, or sometimes resort to ordering in.

Sometimes I take a bath, which helps with pain relief or Dysautonomia symptoms. But I often choose not to risk it if my partner is at work. Getting out of the tub by myself can be challenging and dangerous.

Sometimes I do crafts, or draw, or I work on my canes.

Overall, I would say my life is 75% Netflix and Facebook. It’s not so bad though. Netflix allows me to imagine other lives, and Facebook allows me to have social relationships with others who are like me. What a glorious age we live in! 😛

What was/is the most challenging thing you have faced because of your diagnosis?

Probably the astounding lack of treatment. I manage my care, I do research, I advocate for myself. I have to do these things.

Even when I tell the medical system what I need, they are unable or unwilling to provide it. It is often spun back on me. They don’t know how to help so they dispute the diagnosis, or they discourage me from learning more about my condition. It is so frustrating!

Do you find that you can keep up with others?

No…

What would you tell others living with your diagnosis?

That we need a revolution. Don’t let the system make you feel small. We all have value.

What would you like to tell others that don’t live with a similar diagnosis?

Please try to be understanding. You have no idea how hard it is to live this way.

What have you learnt on your journey?

To be grateful. I know that sounds bizarre. When you have a progressive illness, you have to be grateful and appreciate where you are at today. Because 10 years from now, when things are much worse, you will miss this time.

I thank you heather for sharing your journey with me and the world. Wishing you all the best now and always.

Hopeful always!

💗Anna werrun

Interview With Nycci

This is my interview with Nycci as she shares her story living with Endometriosis, prolactinoma, arthritis, Raynaud’s, migraines, depression, anxiety, insomnia, and ADD. Please be respectful of Nycci and her story as it is told in her own words.

What is endometriosis http://www.mayoclinic.org/diseases-conditions/endometriosis/home/ovc-20236421

what is prolactinoma http://www.mayoclinic.org/diseases-conditions/prolactinoma/basics/symptoms/con-20028094

Learn about Arthritis http://www.arthritis.org/about-arthritis/understanding-arthritis/what-is-arthritis.php

Read about Raynaud’s http://www.medicinenet.com/raynauds_phenomenon/article.htm

Migraines http://www.mayoclinic.org/diseases-conditions/migraine-headache/home/ovc-20202432

Depression/anxiety http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/depression-and-anxiety/faq-20057989

Insomnia http://bodyandhealth.canada.com/condition/getcondition/insomnia

ADD http://www.cmha.ca/mental-health/understanding-mental-illness/attention-deficit-disorders/

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What is your name, age, and disease/diseases?

NycciHorrick, 30, Endometriosis, Prolactinoma, Arthritis, Raynaud’s, Migraines, Depression, Insomnia, Anxiety, ADD

When did life change for you? It has been a very slow and progressive change so I can’t pin point it to a specific time

What was life like before disease?

I really don’t remember. My symptoms from the prolactinoma started when I was about 12. My migraines started around that time too.

How has your disease changed your life?

It makes everyday a challenge in some way or another. Because I can’t really remember life before the diseases I can’t really say how it has changed my life because basically this is all I know.

Please describe the best you can a day in the life of you?

I wake up, exhausted feeling like I have not slept at all no matter how many hours I was asleep. I crack my knees, back and neck so they won’t seize during the day. Then I convince myself to get out of bed. One foot on the floor than the other. WIN! Step one done. Then I get dressed, get coffee and head off to work.

My husband is very sweet and he says very little to me until I have woken up enough to be capable of conversation. Then we are on our way to the bus, I try to convince myself that it won’t be that bad, some days I succeed, other days not so much. So I try to keep my anxiety in check. By this time I have been out of bed for less than an hour. Work is a challenge all of it’s own, but I figure out a way to get through.

I have all kinds of ergonomic accommodations, such as my chair, keyboard, mouse, monitors, desk and footrest. It helps make surviving the workday much easier. Then once work is over I need to get ready for another bus ride. Goody more stress. Once we get back to our car I start to relax and enjoy the drive home. Once we get home I need to figure out dinner, even though I am already exhausted. Ok, so I figure out dinner and get it made, another win.

After dinner I am done and head up to bed and hope that I can fall asleep quickly so I have a chance of getting a decent night sleep. On a good night I can be asleep in 30 min, on a bad night 2-3 hours if I even fall asleep. To me drifting in and out does not count. If I am successful in falling asleep I will probably wake up a few times over night and then all too soon my alarm goes off and it is time to start the whole adventure again.

What was/is the most challenging thing you have faced with disease?

Acceptance and understanding from others. I don’t expect them to understand and honestly I would not want anyone to understand because the only way to understand is if you live through it.

Do you find that you can keep up with others?

I feel like I can’t, but some days if I everything goes well I think I can

What would you tell others living with your disease?

Keep your chin up. You are not alone. You can do this!! Don’t compare yourself with anyone, no 2 people have the same journey.

What would you like to tell others that don’t live with chronic disease?

Please be patient and realize that I did not ask for this and I would wish it on no one. It is hard enough dealing with the hand I was dealt without your opinions and judgment to make it harder.

What have you learnt on your journey?

Each day is a fresh start to learn from yesterday and prepare for tomorrow. I have also learnt how precious the good days are and to enjoy every moment.

Is there anything you would like to add about your journey?

My family and friends that are there for me on this journey make such a huge difference!!!! Just by accepting me as I am provides me so much support and I cannot put into words how grateful I am for them.

Thank you for sharing your story with me and the world. You are an amazingly tough woman. Proud of you for sharing your stroy. Hopeful for you always.

💗Anna