Posts Tagged ‘guest post’

Life with Pandysautonomia

September 22nd, 2014 by Carrie, the Just Mildly Medicated gal

As a blogger it only makes sense that I am also a blog reader. Occasionally I find a blogger that makes me sit and read while mumbling, “Seriously, she nailed it, that is exactly how I feel!” Well that is exactly how I feel about Rach from The Chronic-Ills of Rach. Take a second to read Rach’s 30 Things About My Illness and then head over to her blog and check her out!

 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Pandysautonomia

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: I was a teenager

4. The biggest adjustment I’ve had to make is: to the difference between what I hoped my life would be like and what is actually is like.  I let go of a little bit more every day.  That is hard.

5. Most people assume: that someone will just fix me

6. The hardest part about mornings are: juggling the meds/food/fluids so I can get vertical.  If I get it wrong I will pay for it all day.

7. My favorite medical TV show is: hmmm.  One Born Every Minute!

8. A gadget I couldn’t live without is: My seat/cane

9. The hardest part about nights are: managing my bladder

10. Each day I take 27 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried almost everything, but the only one that stood up was osteopathy

12. If I had to choose between an invisible illness or visible I would choose: visible.

13. Regarding working and career:  I miss it.

14. People would be surprised to know: that I actually have really high standards. If they judged me based on how things are they would think I am a lazy housekeeper, unambitious and probably a bit mental.

15. The hardest thing to accept about my new reality has been: falling short of my own standards every day.

16. Something I never thought I could do with my illness that I did was: stood up to doctors and ask for what I need.

17. The commercials about my illness: ?

18. Something I really miss doing since I was diagnosed is: being physical

19. It was really hard to have to give up: my dreams for our family, the plans we had as a couple.

20. A new hobby I have taken up since my diagnosis is: writing

21. If I could have one day of feeling normal again I would: dance

22. My illness has taught me: to be a patient patient, but only to a point!

23. Want to know a secret? One thing people say that gets under my skin is: how are you?

24. But I love it when people: really want to know.

25. My favorite motto, scripture, quote that gets me through tough times is: slowly slowly catchee monkey

26. When someone is diagnosed I’d like to tell them: to get as informed as they can, join a support group, distract.

27. Something that has surprised me about living with an illness is: how many other people are, too.

28. The nicest thing someone did for me when I wasn’t feeling well was: listen.

29. I’m involved with Invisible Illness Week because:  I believe when people know how many people suffer there will be more kindness.

30. The fact that you read this list makes me feel: like I am not just a statistic.

 

Rach

Katya on Life with P.O.T.S and R.I.S

September 8th, 2014 by Carrie, the Just Mildly Medicated gal

I am always surprised by the connections that I have made through my chronic illness. Katya is one of those connections. I am happy that Katya was willing to share some of her life with *P.O.T.S as many who suffer with the condition are teenage girls. Katya is a 16 year old who has been living life with *dysautonomia for over a year now and I am glad she chose to share some of her story with us during Invisible Illness Awareness Week.

Katya

30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome, or POTS.  I also have RIS, Radiologically Isolated Syndrome.

2. I was diagnosed with it in the year:

I was diagnosed with POTS at Mayo Hospital in Rochester, MN in the Summer of 2013.  I was diagnosed with Radiologically Isolated Syndrome in January of this year.

3. But I had symptoms since:

Before I was diagnosed with POTS, I had been having symptoms for at least a year.

4. The biggest adjustment I’ve had to make is:

I had to stop going to school last year because between doctors’ visits and medicine adjustment it became too difficult

5. Most people assume:

I choose to be antisocial when in reality I can’t go out or have people over because I’m feeling ill or am so fatigued I can hardly stand up.

6. The hardest part about mornings are:

Waking up to realize that another day of fatigue and debilitation await me when I step out of bed.

7. My favorite medical TV show is:

House M.D.  No doubt about it.  House all the way!

8. A gadget I couldn’t live without is:

My computer.  My darling little computer has helped me distract myself from the grieving of having a chronic illness.  Between Netflix and Amazon Instant Video I twisted the definition of “being social”.  From Downton Abbey to Real Housewives of Orange County, I created my own world when I couldn’t be part of the real one.

9. The hardest part about nights are:

When I lay my head down and begin to think about how I could have pushed harder or what the day could have been like if I wasn’t ill.

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

I haven’t tried any alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose:

This is a very tough and emotional question.  At the moment, I choose invisible because I am able to choose who gets to know about my illness and what I am going through.  Invisible illness also limits the amount of pity I would receive from strangers.

13. Regarding working and career:

I’m only 16 and I made most of my spending money through babysitting.  After a couple cases of being on the edge of fainting while trying to watch the children I had to give that up.  I loved the children I use to babysit and no longer get to see them like I use too.

14. People would be surprised to know:

Before I got ill I would run 6 to 10 miles every single day after school.  Running was my passion and my outlet.  I have had trouble finding something to replace it.  I doubt anything ever will.

15. The hardest thing to accept about my new reality has been:

That there is nothing I can do to fix it.  This makes me feel out of control.  It is hard to come to terms with the fact that no matter what you do you can’t change the way you feel.

16. Something I never thought I could do with my illness that I did was:

Go to Disney world with my family.  My dad pushed me in the wheelchair the entire time.  We also got bumped up to the front of the line of every rollercoaster.

17. The commercials about my illness: none

18. Something I really miss doing since I was diagnosed is:

The simple things.  Taking a hot shower (I have heat intolerance).  Going to the grocery store with my mom.  Driving.  Leisurely strolls.  Going to school.

19. It was really hard to have to give up:

The visions and plans I had for my life.

20. A new hobby I have taken up since my diagnosis is:

Collecting sock monkeys.  I take at least one of them on my medical adventures and take a picture of them and put it on facebook to tell my story from time to time.

21. If I could have one day of feeling normal again I would:

Run until I dropped.  I would go to watch my little brother play in his basketball/soccer games (I have missed so many of these).  I would jump up and down and scream and yell without fear of collapsing onto the floor.  I would go shopping with my mom.

22. My illness has taught me:

My illness has shown me how freaking naïve I was before getting ill.  I had no idea what chronically ill even meant.  I could not have even fathomed the pain and suffering that a chronically ill person and their family experience.  I am so blessed and so privileged to be able to relate with such warriors and heroes that are those who battle everyday with chronical illness.

23. Want to know a secret? One thing people say that gets under my skin is:

“I looked online and read that POTS can be cured by exercising.  Have you tried that?”  My response:  “Oh really, well I looked online and saw a picture of you captioned: Dumba**!”

24. But I love it when people:

Say things like, “I don’t know how you do it.”  or “How are you still going?”  It makes me feel like they’re acknowledging that this is a real, physical illness.

25. My favorite motto, scripture, quote that gets me through tough times is:

2 Corinthians 12:9

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.’

There is nothing better than to hear that your pain is not in vain.

26. When someone is diagnosed I’d like to tell them:

Don’t avoid talking about your illness or brush it off as though it isn’t there.  Attempt to accept your illness.  It is never fully possible to completely accept your illness, it just isn’t.  But the more and more you work at it the happier you will be.  Do not let your illness consume you but remember and realize that your illness is a part of you forever.  Don’t fight this fact.

27. Something that has surprised me about living with an illness is:

The majority of people who are also ill or going through difficult situations.  I had no idea of the gigantic amounts of information and nitty gritty gossip I could receive by simply opening up to people about my illness and hurts.  As I began to do this people started to tell me all about their current and past troubles.  Opening up to people and listening to them while they open up to you makes for a much stronger and deeper relationship.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My mother fills my water bottle, makes me food, and massages my feet.  My mom does this on a daily basis.  I still don’t know how she does it.  Many people have brought me flowers, food, and gifts but there is no one who has comforted me and held my hand like my mother.  She is a blessing.

29. I’m involved with Invisible Illness Week because:

I have an invisible illness and Carrie from Just Mildly Medicated asked if I would do a guest post.  I am so honored to be part of this week because it is easy to get cooped up with my illness and forget the many other people dealing with their own.

30. The fact that you read this list makes me feel:

This gives me hope because if you care enough to read this then maybe others will and this will help spread awareness of POTS and Dysautonomia.

fight pots

 

Big thanks to Katya for stopping by during Invisible Illness Week!To learn more about Invisible Illness Week click the link ;)

*Dysautonomia- umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

*P.O.T.S – a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.

Teri’s life with Dermatomyositis; Rare Disease Day

February 28th, 2014 by Carrie, the Just Mildly Medicated gal

I am always amazed with the people Dysautonomia has brought into my life, people I would not have met or had the chance to get to know without having my own illness; amazing people.

Teri is one of those amazing people and like many of us she wears many hats. She is a wife, a mother, a daughter, and even a grammy. She is also an infusion nurse and I am lucky enough to say that she my infusion nurse. Teri also wears the hat of patient, she suffers from a rare disease called Dermatomyosis. Teri is a FIGHTER, she fights everyday for her health and the well-being of others.

I was thrilled when Teri agreed to answer a few questions about her life with dermatomyositis on Just Mildly Medicated for Rare Disease Day. Rare Disease Day is an international movement to bring awareness to those suffering with rare illnesses and to shed light on the diseases.

Huge thanks to Teri, and now some of our questions and answers.

Teri, what is dermatomyositis?

Dermatomyositis, is an inflammatory myopathy that affects the muscles and the blood vessels that supply the muscles.

 

When did you realize something was wrong and that you needed to seek the help from a doctor?

My first symptoms were fever and fatigue which are vague symptoms found in many diseases. I had a difficult time getting diagnosed because my lab work looked okay and the doctors couldn’t seem to look beyond just blood work and the whole time I could feel myself declining, eventually I started having muscle weakness and a muscle biopsy led to my diagnosis in 2011.

 

What symptoms are the most difficult for you to deal with on a regular basis?

I would say my top three are fatigue, weakness and my skin. Fatigue is the worst, no matter how much rest I get it’s a struggle just to make myself move and act like a “normal” person. Muscle weakness is difficult, walking, getting in or out of my car, stairs, even things that should be easy like washing my hair seem like a big accomplishment. With dermatomyositis, unlike other types of myositis I have red open lesions on my skin especially my hands, wrists and chest. This is caused by inflammation of the blood vessels at the surface of the skin That is often the most noticeable to others. There are a lot of people with myositis that have pain, I am so thankful not to put that in my top three. I do have some muscle aches and joint stiffness at times. Swallowing difficulties and shortness of breath are also part of my daily issues.

 

How have you made changes to how you do things to help offset your symptoms?

 I make choices about what is important to me and where I will spend my energy. Before I was “sick” I felt like I had to (and could) do everything. But now I certainly save my spoons for what is most important to me, spending time with my husband, 3 children and granddaughter. I definitely prioritize my time. I try to get plenty of rest, being tired makes everything harder to do. It takes me a lot longer to do things, so planning ahead is very helpful. I am also better about asking for help, which was a very tough thing for me to learn.

 

I know you personally and can say that “you don’t look sick”, when and how do you decide to let people know about your rare illness?

That’s a difficult one because it’s a very thin line between someone understanding and feeling some empathy for your situation and someone feeling sorry for you. I get an extra advantage by being a nurse, when I tell my patients “I understand”, I really do understand. I share with some of my patients some things about my condition especially when it comes to IV treatments. It usually makes them feel at ease that you can have a port a cath and receive IV treatments regularly and still function in daily life. Life isn’t easy and when people have additional factors to deal with its nice to know you are not alone and others do understand. My hope is that I can be strong enough to show others that life keeps going even in the midst of difficulties and it is still worth the fight.

Iv Therapy access

Here is a photo of Teri accessing my port for the very first time. I was so overwhelmed!

 

What are the treatment options for someone with dermatomyositis?

Treatment options for dermatomyositis are anti-inflammatory medications and immune suppressant. During my course of treatment I developed a neutrophil antibody(which means my mixed up immune system thinks my own white blood cells are foreign and attacks them). So, treatment options have become very limited for me because my white blood cell count stays very low. I currently do IV immune globulin infusions every other week and steroid infusions monthly. I also do physical therapy to maintain the strength I have.

 

Do you have a favorite scripture, quote or motto that helps you get through the tough times?

I do. It’s from the song Walk by Faith by Jeremy Camp…”I will walk by faith even when I can not see, because this broken road prepares Your will for me”.

 

How long did it take from when you realized something was wrong to getting a diagnosis?

 It took years. The first time I went to the doctor was in 2003 and multiple doctors, specialist and tests later I was finally diagnosed in 2011. It was the most frustrating part of this journey.

When you received your diagnosis how did you feel?

 I felt relief, maybe I could even say validated. Not that I wanted to have a “diagnosis” especially one with no cure but I had known for years that something was wrong. I was definitely ready to move on to the treatment phase, which has proven to be more difficult than thought.

Thanks for inviting me and helping me be a guest…what a great opportunity to spread awareness.

 

Teri will be participating in the MDA Kansas City Muscle Walk. The Muscular Dystrophy Association funds research as well as providing services for families who suffer from neuromuscular diseases.

If you would like to help in Teri’s goal of raising $500.00 this year please use THIS LINK and on the right click “donate to our team”, the Just Mildly Medicated gal already did ;)

Team K

For more information on the Muscular Dystrophy Association click  MDA

For more information on Rare Disease Day click About Rare Disease Day

 

 

Kat and Beau, a Dysautonomia Service Dog Alert Team

January 2nd, 2014 by Carrie, the Just Mildly Medicated gal

As I sit on a wait list for a service dog I have become more aware of the ways my own life will change when my match is ready. Not just the excitement of the call or the trip to meet him or her but also the changes that having my own canine partner with me will bring.

 

I am lucky enough to be part of a large social network that gives me the opportunity to connect with so many people. Kat is one of the people I have connected with and she has been kind enough to share her journey with me and now with all of you.

 

Thank you Kat!

Kat and Beau

 

 

I know you suffer from Dysautonomia but the illness can be so different from person to person. Can you share with us how Dysautonomia has impacted your life?

 

“Dysautonomia has impacted my life greatly. My symptoms started when I was just 9 years old. I would pass out on occasion but doctors couldn’t find anything wrong with me. Since my symptoms weren’t too bothersome, I began competitive swimming and was ranked in my state. Swimming was something I loved and planned on doing through college. At age 16, I had a tilt table test done and when I passed out, my heart stopped for 28 seconds. I was diagnosed with Neurocardiogenic Syncope and had a pacemaker implanted. We believe the surgery triggered my Dysautonomia and caused my symptoms to intensify.

After my surgery, I began passing out daily- 5 to 10 times. I unfortunately had to quit swimming because my symptoms became so extreme. Early this year, I saw a specialist who officially diagnosed me with Dysautonomia, POTS, and Gastroparesis. Day to day, syncope is my most bothersome symptom because it greatly limits my independence. I often require the use of medical devices such as wheelchairs, walkers, and shower chairs. I’ve seen many specialist for my conditions and none of them really know what to do with me. Two cardiologists have officially said that I am the most complicated case they’ve seen. For most, medicine does the trick. 

 Many people ask me how I can go through all of this with such a great attitude and I just tell them about all of the amazing people I have met along this journey and the many blessings I have received that I wouldn’t have otherwise like Beau.”

 

What originally made you think you pursue a service dog?

 

“My grandmother heard from a friend about a one of a kind dog alerting to syncope. Most medical alert dogs alert to diabetes, seizures, and allergies so syncope is new to the service dog world. I was turned down by multiple organizations until I finally found one willing to experiment and try to train a dog for syncope. “

 

I’ve had the pleasure of seeing pictures of Beau before today and he is an adorable labradoodle. What was the process like to chose Beau?

“Beau’s trainer prefers to work with labradoodles not only because they are loyal and loving dogs, but because they are also hypoallergenic. The breeder did an aptitude test on the puppies to see which ones would be good for service work and that’s how Beau became mine. I couldn’t imagine having any other dog be my hero. “

 Blog Kat1

 

What types of things will Beau do to assist you?

“At an early age of only 11 weeks old, Beau alerted to a syncopal episode and has been doing so ever since. That in itself is a miracle but Beau will learn much more. He will be able to pull my wheelchair, help retrieve dropped items (bending over causes syncope) get help when needed, and much more. He is amazing and will help me to gain my independence back. My hope is that I will be able to attend a college with him rather than doing online courses.”

What is Beau learning right now?

“Beau naturally began alerting to syncopal episodes when he was just 11 weeks old. Ever since then, he has hasn’t missed an episode. Right now, Beau is working on a multitude of things. He already has all of the basic commands down and even knows them in sign language. So the next step for him is to learn the more specific commands that I need him to know.”

 

You are able to share time with Beau during his training so you are getting a taste of what daily life with a service dog will be like. What would you say has been the biggest adjustment to life with a canine partner has been so far?

 “The biggest adjustment to having a service dog at your side is learning to deal with people. Many will stare and some will even make comments. Some of those comments will be positive, and some will be negative. It’s also really hard when you are dealing with an employee who doesn’t know ADA law and tries to tell you that your dog is not welcome. This is all the more reason why we need to spread Service Dog Awareness!”

Beau at work

Beau at work

Dysautonomia; Celiac Disease; hypoglycemia; Rare Disease Day

March 1st, 2013 by Carrie, the Just Mildly Medicated gal

This Guest Blog Post is from a teenager in my very own town. Our coming into contact was one of those odd connections that a few minutes difference or one conversation change and we’d of never known about each other.
After a doctors appointment I called my husband to let him know how it went. He was getting ready to go into a meeting but was able to get the update. While in the meeting he mentioned to a colleague that I had been diagnosed with Dysautonomia, something called POTS. This colleague couldn’t believe it, she told my husband how her daughter has POTS (postural orthostatic tachycardia syndrome heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing).
Thanks so much for sharing on Just Mildly Medicated!
 
 
1. The illness I live with is: Dysautonomia ,with digestive problems, heat and exercise intolerance,crazy heart beat and gerd.  I have a cranky pancreas (some times reactive hypoglycemia, sometimes diabetics/pre- diabetics, sometimes chronic hypoglycemia). I am learning “disability not other wise specified” I also have food allergy’s and intolerance as well as celiac disease.
 
2. I was diagnosed with it in the year: 2011 
 
3. But I had symptoms since: 2010, some I’ve always had. 2012 for food allergies
 
4. The biggest adjustment I have had to make is: Not being able to go, go, go . I often cant keep appointments because I never know if i will feel good or not.  Practicing extreme measures to avoid cross contamination of my food. If I touch something that has been touched by food that is not safe for me to eat then touch my food, and eat it i will get very sick. Being prepared to treat hypoglycemia when not at the house. 
 
6. The hardest part about mornings: Getting motivated to face the day, especially fixing breakfast. And the indigestion and bed taste (gerd) in my mouth I often wake with . 
 
7. My favorite medical TV show is: I don’t watch medical TV, but does Dr. Pol count. 

 
8. A gadget I couldn’t live without is: blood glucose meter. And for my sanity (or lack of ) a lap top. 
 
9. The hardest part about nights: Getting my blood sugar stabilized to go to sleep. 
 
10. Each day I take: no pills
 
11. Regarding alternative treatments: I prefer the normal ones (like eating salt) over pills, but roll my eyes at the ones that say things like “we can cure your diabetes with  this herb and you can eat junk food”. 
 
12. If I had to choose between an invisible illness or visible I would choose: invisible. On a good day, it can just be a good day with minimal time spent on my illness, not constant stares and pity. 
 
13. Regarding working and career: I’m not old enough to work ,but I’m not looking forward to that when I am of age. I can barely get to a doctor appointment much less act fine for many hours a day.
 
14. People would be surprised to know: How much goes into eating or an outing. 
 
15. The hardest thing to accept about my new reality has been: Not doing a hole lot to avoid over doing it. 
 
16. Something I never thought I could do with my illness that I did was: There is nothing I have done I didn’t think I could do. 
 
17. The commercials about my illness: I haven’t seen any. 
 
18. Something I really miss doing since I was diagnosed is: Well a official diagnosis didn’t change what I can and can not do . What I do miss is being able to do a bunch in one day, and  eat with no worry of allergens. 
 
19. It was really hard to have to give up: Being able to do what ever I want like show horses all day in the heat, do strenuous horse chores (even more when its hot out). 
 
20. A new hobby I have taken up since my diagnosis is: Being evolved in the illness online community, not actually posting but reading others. 
 
21. My illness has taught me: Not just my illness but events tied to it, have taught me a lot of compassion. Never judge someone, you never know what they are going though.
 
22. It bothers me when people say: When doctors, or healthy people discount what I’m saying. The doctor who doesn’t care if that medicine is making you worse, “it should help”, or you seem fine. “Is it really necessary to test you blood sugar that much ?”  Yes, I go very low with no symptoms. If I don’t test to find out it could get really bad. 
 
23. But I love it when people: Are supportive, and allow me to take my mind off it. Or show genuine concern and sincerity but don’t quiz me on it. 

24. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. 
 
26. When someone is diagnosed I’d like to tell them: Mine is that same as Just Mildly Medicated, you will find a new normal . 
 
27. Something that has surprised me about living with an illness is: I got used to it. Not as well as some people, when I feel bad I still can’t function but its not as bad now. 
 
28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me, I didn’t feel well enough to talk but just keep me company. Also take me on a car ride when I was sad and kind of depressed.
 
29. I’m involved with Rare Disease Day because: Well I wouldn’t have been If not asked , I wasn’t aware it existed, I only knew of world diabetes. Now that I  know I wanted to participate and spread awareness for Celiac Disease, food allergy’s, Dysautonomia and any blood sugar problem. 
 
30. The fact that you are reading this list makes me feel : Like I have helped spread awareness for the conditions listed above. And a little less of a lurker.
 
To see a little more about what your Autonomic Nervous System does and all of the things that can be impacted when it doesn’t function properly you can see the image below.
Thank you for always checking in on Just Mildly Medicated

Lupus and Ankylosing Spondylitis; autoimmune disease; Rare Disease Day 2013

February 27th, 2013 by Carrie, the Just Mildly Medicated gal

I am so proud to bring you a post from Jody, a strong Army wife and mother, a woman who is a fitness role model to many who do not know her story. I had the pleasure of forming a friendship with her the year before we each started very different journeys through the diagnostic process for different conditions.
Thanks so much for sharing!
Carrie @ Just Mildly Medicated


I’m a 37 year old military wife, mom, fitness enthusiast and someone who now lives life with a pill box I used to see my grandparents have, labeled Mon-Sun full of pills I have learned in the last 3 years control my wellness. Sounds depressing I know and trust me I’ve been there and done that but now I have embraced that for now this is what I need to function and live life to it’s fullest and instead of hiding the box and pretending I feel GREAT all the time I am honest that I have good days and I have not so great days and on the days I feel good enough to push myself and my body I DO and when I can’t, I don’t cry anymore. I tailor and accept tomorrow is a new day. 

 It all started about 3 years ago. As a fitness instructor, personal trainer for quite a while I got to a place in my heart that I knew something wasn’t right with how my body was functioning. I had run the Army 10 miler setting a personal record of 72 minutes in October and by mid-November I was feeling winded just walking up my incline driveway. The headaches were excruciating and to say I felt lethargic was an understatement. I felt terrible, no stamina, little energy and around Jan. I miscarried our 3rd child and again was living on Excedrin to function. 

What I used to do effortlessly on the spin bike and in my cardio class was excruciating. So 6 weeks later I decided I needed to seek help. I saw a provider who actually listened to me and started to uncover the underlying problem but it took about 6 more months before I really knew what was happening. 

Severe anemia, and that was after colonoscopy, MRI of my brain, EKG, Stress test, that’s what they came up with and they weren’t sure why I was so anemic. Long story short we moved, I left that Dr. and landed in Alaska where now I was having what started as 2 knuckles on my left hand swollen (for years) turn into 3 knuckles and then I could barely write my name, because I couldn’t grip the pencil. I couldn’t open jars, again thinking it was muscle stress I wrote it off because I was feeling more energy from the iron I had introduced to my life but then it all hit again…fall in Alaska, COLD already, I was having a hard time just getting out of bed and moving freely. I noticed energy levels fading so I went into a new PCM to get some blood work done for what I thought would help me adjust my iron levels but the results came back with a shock. 

My husband had just left for JRTC, getting ready to deploy for a year, and the Dr. called and said my blood work came back with a positive ANA which meant one of 2 things, I had SLE (systemic lupus or Scleroderma) Say what? I heard the Dr. say I’m sorry, this will be hard for someone like you who is so active but I am recommending a compassionate reassignment for your husband and a great rheutmatologist to get you the best care. 

OK wait my husband’s career is on the line, he’s gone and I’m left with 2 kids and a Google search that dropped me to my knees with the “what if’s and what nexts” So know I am being treated with not only Lupus but also Ankylosing Spondylitis as the rheumatologist uncovered after extensive xrays fusion in my pelvis, spine, shoulder that has fused and exposed probably 10 or more years of living with these autoimmune diseases. 

So today I take a low-chemo drug, I inject myself every other week with a drug for the movement of my joints and hopefully to avoid further tissue,joint damage and daily take at least 3 other meds and as frustrating as it can be that nobody knows I have days when I can barely move because heck , I am 37 and teach fitness classes and volunteer at school and teach Sunday school and seem like every other super mom want-to-be :) my story doesn’t end there! 

I am determined to FIGHT this as naturally as possible but with the realization that I need meds as well. I have tried an inflammation diet I think helps but I have also learned if I think I can go without my meds I will flare and it might end me up in the ER with pleurisy/fluid around my lungs and when I can’t breathe it’s scary. 

AWARENESS is so important and I’m glad to know I have a friend who is dedicated to sharing truth and knowledge as knowledge is power when it comes to you own health! So I am learning autoimmune diseases couldn’t be more frustrating because they mimic each other and nobody can really pinpoint one vs. another and the treatment is a science experiment and I’m the variable :( but I have also learned to Carpe Diem in a BIG way in my life and cease every moment I can function normally without much pain and never give up, never give in, never lose HOPE! 
Jody

Links for more information
Spodylitis Association of America
U.S National Library of Medicine Systemic lupus erythematosus (SLE)

Idiopathic Hypersomnia; Rare Disease Day 2013

February 26th, 2013 by Carrie, the Just Mildly Medicated gal

Just Mildly Medicated is so happy to bring support to a friend as well as awareness to Idiopathic Hypersomnia and Rare Disease Day. This is from Shep, a hilarious Jersey guy who actually chooses to spend some his waking hours chatting it up with me.
Take it away Shep…
1. The illness I live with is:   Idiopathic Hypersomnia  which is a chronic, incurable Central Nervous Disorder where in simple English, the sleep neurotransmitter malfunctions (think of it like a light switch stuck in the sleep position) and your body never gets a full amount of normal restorative sleep.  Many people with this disorder will sleep 14-20 hours a day and then be exhausted the few hours a day that they are awake.  I do not have this “long sleep” version of the disorder. I wake up easily at a normal time, but wake up exhausted, stay exhausted, nap in the afternoon which is not restorative so I wake up from my nap, still exhausted and spend the rest of the day and night exhausted….see the pattern?
At its worst, I cannot maintain my mental focus for more than a short period of time  so my ability to think, to work, to speak and have a meaningful conversation with someone is exhausting because I often I struggle to  find the words I want to use to express myself ….in many ways, I have become a hermit in my home and have become largely dependent on my wife to drive during the large chunks of the day and night, when I cannot safely be behind the wheel of a car both for my safety and yours.

2. I was diagnosed with it in the year:  2007 but it got significantly worse two years ago.

3. But I had symptoms since:  1988 after I had another illness called Sarcoidosis which knocked me on my rear end for almost a year. My health has never been the same since.

4. The biggest adjustment I have had to make is: despite desperately wanting to participate fully in life, I am often forced to be an observer rather than an active participant for more than a short period of time before my energy completely peeters out. All that said, I will try until my last day, to have fun, to laugh, to enjoy my wife, my kids and my friends, to travel, albeit at a slower pace and generally be grateful for all the blessings that I do have in life.

5. Most people assume: that they understand how I feel.  What they understand is being tired at the end of a busy day, what they don’t understand about living with unremitting exhaustion  is waking up completely wiped out and going then going downhill from there. Being so drained that your bones hurt and all you want to do is curl up somewhere and cry. That forming sentences becomes your enemy because you can’t reach through the brain fog to find the words you need to complete a sentence. Living your life primarily on your sofa and that most of your friendships are on Facebook because face to face extended human interaction is physically and mentally overwhelming and exhausting.
6. The hardest part about mornings: is that it takes me two or more hours after waking and taking my medications and drinking a lot of coffee, to finally have some semblance of mental clarity to work for three or four hours before my body gives out
7. My favorite medical TV show is:  N/A…  I don’t have the patience or the sustained focus for network TV

8. A gadget I couldn’t live without is:  my CPAP machine which keeps me breathing as I sleep. In second place would be anything that Apple manufactures

9. The hardest part about nights:  nights aren’t bad, days are challenging

10. Each day I take:  a stimulant that is supposed to make me more alert, but is only slightly more effective then drinking Diet Coke. I also take a full complement of daily vitamins and mineral supplements,, sub-lingual B-12, weekly B-12 injections, weekly IV for a massive load of vitamins and minerals, and assorted potions and notions and active bacteria to build up my strength and my immune system which is less reliable than my soon to be replaced car….

11. Regarding alternative treatments:  I am strongly in favor them….Dr Bombay was my favorite guest character on Bewitched and I’m pretty sure he was an alternative practitioner 

12. If I had to choose between an invisible illness or visible I would choose:  Invisible….I can keep up the facade of normalcy to people who don’t know since I look and I hope that I act normal…I am only now begin to let down my guard with others and be honest about my health and limitations without as much fear of being judged or ridiculed. I have enough self-esteem that if someone chooses to judge me based on their misguided judgments or lack of compassion, then I do not need them in my life.

13. Regarding working and career:  I have been forced to shrink my CPA practice because my energy level and maybe more importantly, my ability to focus for more than a short period is so compromised.

14. People would be surprised to know: how lousy I feel a lot of the time, even though they see a relatively happy person on the outside

15. The hardest thing to accept about my new reality has been: that my best days are behind me although I have learned that happy fulfilling days are still ahead of me, even if they are different days then I would have expected before this thing got bad.

16. Something I never thought I could do with my illness that I did was: to learn that I am a much stronger person then I ever thought possible, that I am a fighter and I’m not giving up on fighting this blasted disorder

17. The commercials about my illness:  N/A

18. Something I really miss doing since I was diagnosed is:  living every day like a normal person, driving longer than 10 minutes from home without fear of getting into an accident, going out to restaurants, theaters and movies and not having to back out of events because I’m so wiped out

19. It was really hard to have to give up: being a somewhat healthy person who could at least, pretend to still be a normal person

20. A new hobby I have taken up since my diagnosis is:  me….I’ve discovered something special deep inside and become a much better, emotionally stronger me as I have accepted the hand that I’ve been dealt and developed the mindset of  “f*** you, I’m not going to be defeated by this thing.”

21. If I could have one day of feeling normal again I would:  just enjoy feeling like a young 54 year old, not an old 54 year old

22. My illness has taught me: what every six year old knows, that life is not fair so get over it and suck it up, buttercup!

23. It bothers me when people say:  if you’re tired, take a nap but it bothers me more when people who should say something, say nothing…that’s a horrible feeling

24. But I love it when people: listen without judgment and express concern and love even if they cannot fully grasp what I am going through

25. My favorite motto, scripture, quote that gets me through tough times is:  get out of bed and just live to the max, whatever the max is that day

26. When someone is diagnosed I’d like to tell them:  you have two choices, you can either “give in or give up” or you can fight with every fiber of your being to make sure that you live every day to the fullest that you are capable of doing

27. Something that has surprised me about living with an illness is:  I’m a lot stronger than I ever knew and that I do have people who love me and accept me for who I am now

28. The nicest thing someone did for me when I wasn’t feeling well was: marry me, understand me and never judge me when I have to cancel plans at the last minute or tell me that it’s okay, when I am so exhausted and that I can’t think straight anymore.

29. I’m involved in bringing attention to Rare Disease Day because: many people, including several of my good friends also have invisible chronic illnesses and we all need more understanding, compassion and support…

30. The fact that you are reading this list makes me feel that maybe I can teach you something about people who may look fine, but are, in reality, struggling to get through each day.
 
Shep Greenberg