What an Honor

Blog post 1-1-18

It has been an honor to be added to “The Wall” as I like to call it of The Faces of Ankylosing Spondylitis. Helping a huge inspiration of mine to see her vision through has been so rewarding for me. Though it may seem small and trivial to some people, it really means the world to me. To help bring a voice and a face to a disease that is so misunderstood, even by the medical profession.  To help show people what an invisible disease looks like. Often times when I look my best on the outside, I feel my worst on the inside. We are often accused of “pretending to be sick”, but in all actuality, we pretend to be well. It’s easier that way, to avoid the constant barrage of questions or “have you tried this”.  I feel fine has become my go-to line, but those that know me, know. I would love to work a normal job, go to the gym again, play catch with my son in the backyard, walk my dogs, go canoeing, camping, hiking, garden again, clean my house without worrying how I’m going to feel the next day because of it.

So Yes as silly as it may seem to some people, it is indeed an honor to be put on “The Wall” to represent The Faces of Ankylosing Spondylitis for Cookie. No this isn’t the life I envisioned, but it is the life I have and I am going to do everything I can to better it, and hopefully make others that are going through the same thing better too. We are Stronger Together.

via Christina Lowe

Advertisements

Strength

Sometimes it’s not that easy, other days it is. Dig deep, push aside the past, forget your pain, and rise above. We all have scars, we all have demons, to what extent do you let them rule your life?! You must persevere, stand strong, face the unknown, no matter how scary it is. If not for yourself, do it for those you love. They deserve the best of you, even when you don’t feel the best. When you can’t give the best. You’re stronger than you know. 

Passing me by

In the blink of an eye, time, is passing me by. Before I know it, day has turned into night.

Where does the time go? 

Does my pain take it from me? 

Do I let It? 

Do I have a choice?

Sometimes I feel brave enough to face it, to conquer a day, only to regret that decision the next. 

Is this how life is now?

A trade off. 

A good day of doing something you love, for more intolerable pain and misery for countless days to come? 

This is chronic pain, this is an invisible illnesse. This is Ankylosing Spondylitis and SpA, SLE Lupus, Endometriosis, Migraine disorder, Peripheral Neuropathy. 

Barely getting by on the medicine I’m allowed, while raising a family. I have to weigh each decision at the age of 36, can I go? Can my body take it? Do I have enough meds? 

There has to be a better way. 

Depression and Chronic illness part 2

pablo (8)

 

So, I went to see my shrink, and it was confirmed, I was having a manic episode. I have ADD and anxiety already so I have maintenance visits to see her and we chat about things and see how I’m doing. This was long before I was ever diagnosed with any of my illnesses, but I have noticed now that anxiety and ADD also play a part in my illnesses.

According to my GI doctor, and the Mayo Clinic, my IBD is related to an overactive nerve, ADD is overactive and so is anxiety. I have had GI issues since I was in my teens. My shrink and I talked about increasing my ADD meds the last visit but held off in hopes that I was just over working myself and could get things under control. Also with my new diagnosis of Lupus we knew that there was going to be some mental changes I would have to go through, just like with my diagnosis of Ankylosing Spondylitis, and I was willing to put my faith to work and get through it.

I also found out, that the prednisone I had been taking for 4 months to help with the Serositis that the Lupus caused, that I am now weaning off of is giving me withdrawal symptoms. I have never taken prednisone before, so I had no idea that it could do that to me. I am tapering from 10mg one day to 5mg the next, back and forth. I know everyone’s body is different, and apparently mine is wigging out. Not to mention, it is getting hard for me to breathe again, the pain is back, and I’m guessing I’m having a mega flare on top off a manic episode.

So needless to say my visit to the shrink was much needed and very informative. She corrected my meds and added a mood stabilizer to my cocktail of  “But you’re to young to be sick” invisible illnesses, to help level me out while I am tapering down from the prednisone.

Please, if you are ever feeling down or like something isn’t right, please go see a doctor. Do Not be ashamed! There is absolutely nothing to be ashamed about! NOTHING!!

These are signs of Chronic Depression (Dysthymia), which according to According to the National Institute of Mental Health, approximately 1.5% of adult Americans are affected. So there is no reason to feel ashamed or embarrassed if you feel this way. The stigma that there is something wrong with people that are depressed needs to go away. You need to do what is right for you! This is your life, not societies!

  1. Sadness or depressed mood most of the day or almost every day
  2. Loss of enjoyment in things that were once pleasurable
  3. Major change in weight (gain or loss of more than 5% of weight within a month) or   appetite
  4. Insomnia or excessive sleep almost every day
  5. Being physically restless or rundown in a way that is noticeable by others
  6. Fatigue or loss of energy almost every day
  7. Feelings of hopelessness or worthlessness or excessive guilt almost every day
  8. Problems with concentration or making decisions almost every day
  9. Recurring thoughts of death or suicide, suicide plan, or suicide attempt

These are the warning signs of Major Depression according to WebMD and The National Institute of Mental HealthMajor depression affects about 6.7% of the U.S. adult population, and about 20% – 25% of adults may suffer from an episode of major depression at some point during their lifetime. If this sounds like you, make an appointment and talk to someone. I can tell you from experience, it doesn’t get better from here, especially with a chronic illness smacked on top. Bottling up those feelings, no matter what they are, is no good.

  1. Fatigue or loss of energy almost every day
  2. Feelings of worthlessness or guilt almost every day
  3. Impaired concentration, indecisiveness
  4. Insomnia or hypersomnia (excessive sleeping) almost every day
  5. Markedly diminished interest or pleasure in almost all activities nearly every day (called anhedonia, this symptom can be indicated by reports from significant others)
  6. Restlessness or feeling slowed down
  7. Recurring thoughts of death or suicide
  8. Significant weight loss or gain (a change of more than 5% of body weight in a month)

pablo (7)

These are signs of Severe Depression and they should not be ignored. If you are feeling this way or you notice someone you know or love or are caring for is feeling this way or acting this way please seek help immediately. According to WebMD and The National Institute of Mental Health these are the clear warning signs that could potentially lead to something far worse. 

  1. Alcohol or drug abuse
  2. Insomnia or excessive sleeping
  3. Irritability
  4. Loss of interest in activities that used to be enjoyable
  5. Hopelessness
  6. Persistent thoughts of something bad happening
  7. Thoughts of death or suicide or suicide attempts
  8. In very severe cases, psychotic symptoms (such as hallucinations or delusions)

 

Risk Factors for Suicide

Not all people with risk factors will be suicidal. In addition to depression or other mental illness, risk factors for suicide include:

  1. Past history of substance abuse
  2. Past history of suicide attempt
  3. Family history of suicide
  4. Family history of mental illness or substance abuse
  5. Firearms in the home
  6. Incarceration
  7. Feelings of hopelessness
  8. Suicidal Thoughts: An Emergency

For people who are severely depressed, suicide is a real threat. Each year, about 30,000 people in the U.S. take their own lives, although the true number may be higher. Some suicides go unrecognized because they’re classified as accidents, drug overdoses, or shootings. Among people whose depression remains untreated, up to 15% will kill themselves according to WebMD and The National Institute of Health

The National Suicide Prevention Lifeline says to be on the look out for these signs that someone you love or know could be thinking about taking their own life. Unfortunately in some cases, you will never know. The person doesn’t want anyone to know and will often carry on as if nothing is wrong so that no one can stop them. Sometimes they will give away things that mean a lot to them out of nowhere. They can get to a point where they are no longer showing signs of asking for help on the outside. Almost like they have come to terms with their decision.

  1. Talking about wanting to die or wanting to kill yourself
  2. Looking for a way to kill yourself, such as searching online for methods or buying a gun
  3. Talking about feeling hopeless or having no reason to live
  4. Talking about feeling trapped or in unbearable pain
  5. Talking about being a burden to others
  6. Increasing use of alcohol or drugs
  7. Acting anxious or agitated; behaving recklessly
  8. Withdrawing or feeling isolated
  9. Showing rage or talking about seeking revenge
  10. Displaying extreme mood swings

Struggling with your mental health is no joke, and should be taken seriously. I have lost people close to me to suicide and it is not something that should ever be taken lightly. Our minds are very powerful and what we put in them, our thoughts, our influences, our self- talk, can hold a lot of weight. Be kind to yourself and to those around you, you never know what is going on in someones life. Just because they are smiling and look like they have it all together, doesn’t mean they do.

If you or someone you know is struggling with thoughts of suicide click this link. Your life is worth saving. Hope is a powerful thing, and if you hang on to the notion that you Hope things will be better. They just might end up better. Always Hope.

https://suicidepreventionlifeline.org/

 

cited sources- WebMD/National Institute of Health/Suicide Prevention Lifeline

I have more Specialist than I do friends.

In my absence I have had a few doctor appointments. I saw my rheumatologist, I’m being weaned off of the predisone I have been on for 4 months for serositis.  So I feel like I am being squeezed constantly and I can’t breathe anymore. The meds that the pulmonologist gave me for that did not help. I had a bad reaction, so I am left with a rescue inhaler that really does nothing, since I’m out of breath just talking or walking down the hall. This is all for the severe asthma that they say I have since I failed the methocoline challenge, loosing 86% of my oxygen. I am able to get oxygen, just not expel it. I get short of breath very easy, which I am told is common with both AS and Lupus or in other words Connective tissue disorder. On the bright side the prednisone was helping my breathing, and hopefully has gotten all of the fluid out of the lining of my vital organs.

I saw my neuro-opthomologist yesterday about my migraines. The eye that my migraines start in, the horrible pain I get right before a migraine, in the back of my right eyeball, and in my right ear, usually before a storm, or if the pressure has dropped. That is what triggers my some of my migraines. My lupus ones are triggered by being out in the heat for to long, usually the 2nd or 3rd day of a baseball tournament and I am toast. I take a preventative and I take the as needed medicine, but lately the as needed hasn’t been working for my migraines, and they have been coming on more infrequent and with no pattern. I have noticed going in and out of the AC a lot will trigger a headache that if I can’t catch in time will turn into a migraine, bright lights, loud noises. All related to Ankylosing Spondylitis progression and Lupus progression from what I have read. However, the optic nerve in my right eye is not going straight back like my left one it is going up. My neuro-opthomologist noticed it the last time he saw me and this time he seemed a little more concerned about it. My eye didn’t hurt until after he shined the light in it a hundred times and did a scan of it then had me do a field vision test for my peripheral vision, which is going in my left eye. sheeshhh.

pablo (6)

I go to the opthomologist this week coming up to do a full vision panel and have my eyes dilated and all that fun jazz. My migraine preventative was bumped up to 250mg and an extended release and my as needed was changed to another one that is faster acting. It is amazing how destructive these autoimmune diseases can be to our bodies. Not only does it mess with out bodies but it also affects our minds too. In some people it can alter your chemicals and make you depressed, we can get brain fog and forget things, our cognitive skills go out the window and it’s not our fault.

I know for me after a bunch of doctors appointments I really just like to be alone. My appointments are never good news. They always seem to be telling me something new is wrong. It takes me some time to absorb what is happening, talk to my support group, lean on my close family, friends, and my dogs🐕 The stress of the unknown and the worry is not good for anyone, especially people with chronic illness, so I have learned to let that worry go. It has taken some time, but I know that what ever is going to happen, is going to happen and me worrying is not going to change the outcome. It is only going to make me sicker and that is not good for me or anyone around me. Now I’m not going to say that I never worry at all because that would be crazy, we all do, its natural, but I’m not as bad as I used to be.

I have learned to walk by faith and not by sight, because honestly, I have absolutely no other choice if I want to stay sane. There is so much going on in my body that I do not understand. There has to be a reason that my body is attacking itself. I know the obvious reasons, genetic, environmental, autoimmune diseases. Believe me I’ve done all my reading and research, I could be a scientist or a doctor by now, but making sense of it all when I am in pain or being bounced from doctor to doctor just isn’t easy sometimes.

 

Everyone has their views on faith and spirituality and to each their own, I applaud them all, because I believe they all stand on the basic principle, “Do unto others as you would have done unto you.” Be a kind person, help those in need, give more than you take, stand up for what is right, look for the good in every situation, stay positive and you will get positive back. The energy you put out is what you get back. I believe this is good for all people and especially good for those of us with Chronic illnesses, when it is so easy to stay stuck in the negative. It is ok to be upset, I recently went to see my shrink about my anxiety over my chronic illness and possible depression.

We can’t stay there though, we have to figure out how to get out of it. Whatever works for you, reading, taking a nap in the afternoon, chatting with your friends, meditation, mindfulness, religion, exercise, medication, music, gardening, sewing, journaling, photography, drawing, coloring, baking, etc.  I can go on forever, you just have to find what you joy is in life and when things get tough turn to it. We are in this for the long haul, and we are fighters.

Depression and Chronic illness

pablo (5)Where do you draw the line between being tough and strong, and I’ve had enough?

How do you even know where that line is?

It is so hard to discern when you have a chronic illness, whether you are going through a flare and that is why you are not yourself. Or whether you have reached a point in your journey where you are depressed.

For me, many times in my life I have thought I was depressed, or told I was depressed. I sought help and tried to take anti-depressants, ending up each time having a horrible reaction to them. My brain chemicals reacted the opposite of what they are supposed to.  I would get very angry, hostile, suicidal, and I knew right away that it was the medicine doing it.

So what do you do when you find yourself in that situation again?

This time knowing that what you’re going through due to your chronic illness and according to Mayo Clinics depression (major depressive disorder)  I fit the criteria pretty good. I had someone close to me recently say that I am just a “naturally happy person”. I literally wanted to scream to the top of my lungs. It is so hard to smile every day when you hurt. When you go to a doctor appointment and you feel like they didn’t help you one bit. Or you can’t go to the doctor because you know they won’t help you. 

I do honestly believe that you have to make a choice. There is no I’m just a naturally this way person, or that way person. You are what you want to be. You are what you choose. No you can’t always help how you feel and you may need help sometimes getting through things that are difficult. We all do, no one is immune from the worlds cruelties, and people do have chemical imbalances that need to be addressed.

It’s how we choose to overcome them that make us who we are. We can sit back and do nothing about it and use the excuse that  “I’m just a negative person” and bring everyone around you down. Or you can choose to better yourself, get help if needed, figure out where the hiccup is in your life, and get back on the field.

I am a perfect example, I have no idea what is going on, but I know something isn’t right. I’m terrified to talk to my shrink about it because I’m also terrified of the drugs because of what they do to me. I don’t know what my other options are. I have been praying, I have been changing my thought pattern as soon as down thoughts creep in. Nothing takes away my pain, nothing gives me motivation, nothing keeps me from snapping at everyone in my family, or loosing interest in the things I used to love. Nothing is keeping me from sleeping all day or not sleeping, or from being agitated all the time.

The first step is knowing you have a problem, the second step is talking to someone… If you are in the same boat, don’t be ashamed or afraid, get help. You’re not alone, we are stronger together.

To often we do to little…

IntegrityFar to often we have compromised our beliefs or for the sake of hurting others feelings. When it seems that lately this world has become a society of you hurt me I will hurt you. Everyone has become so quick to react, and has stopped listening. We have become a people so consumed with voicing our opinion and being heard, and not stopping to put the shoe on the other foot sometimes.

To often we do to little to help someone in need. Someone that is hurting, and needs a hand up.

To often we do to little to help someone by simply listening to them, not trying to solve their problem, but lending an ear and being a friend.

To often we don’t think of the children in other countries that are drinking dirty water, and have to walk miles just to get it.

To often we forget that there is still human trafficking going on in the world, it is alive and well and women and children go missing everyday and are sold into this horrible world.

To often we lose sight of things that are going on in the world because we are so caught up in our own needs and wants. We forget that simple act of thinking of others before we think of ourselves. We get caught up in the “media trends” and we lose our basic humanity to help others.

What happened to waving when someone lets you over in traffic? Am I the only one that still does this? I challenge anyone reading this post to start that trend back again. The simple little wave when someone lets you over in traffic, to say “Thank you.”

T.A.G. -you’re it –    !!

Handicap Placard.. Use or not use?

pablohttp://www.thursdaysageek.com/2017/09/handicap-placard-use-or-not-use.html

Here is a blog post from my blog on Blogger. I often wonder how many other people this happens to? How many of us wonder and debate parking in a spot that we have “permission” to park in, because we are scared to get discriminated against. I know I am.