New Discoid Lupus tab with lovely pics included!

For the longest time, I was embarrassed by my rash. Tried to cover it up. Feel shame when people look at me because I know they are just looking at the rash. And for some, who do not know any better, they think it is contagious. Whatever! Now, I feel like there is nothing to be embarrassed about because I can't help it. Think what ever you want. It is what it is. Actually, sometimes, I find humor in what the rash appears to resemble.(One looked like a hickey) Yeah right! LOL So I decided to post a few pics to share. You DO NOT have to be embarrassed! You DO NOT need to feel shame! So, I am putting it out there! Click on the tab at the top of the blog titled "My lovely Discoid Lupus Pics" or simply click on the link.
Hugs!
Jenn

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Depression...what people really don't know.

Ever since the tragic passing of the great Robin Williams, depression has come out of the shadows. Now, Wayne Brady and other famous people are "coming out". People think "Well, what do they have to be depressed about? They are famous and rich!". Depression is not that simple. I have Major Depression. I have for years. I take medication daily to help but it doesn't take it all away.   A person who has never had depression will NEVER truly understand what it is like. It is NOT just feeling down or blue. It is not about your material possessions, how much money you have or how well off you are. It is this deep down, sorrowful, gut wrenching sadness. Sometimes, it's not sadness. Sometimes it's anger, feelings of worthlessness and having no purpose. You don't want to get out of bed. You don't want to go out of the house. You don't eat. You just want to be left alone, in a dark room to hide under the blankets. It can have physical effects too. Causes you to have pain, migraines, muscle spasms and not make you physically able to get out of bed. Seriously! Ya know, I really didn't understand how a person can be so depressed that they physically could not get out of bed until it happened to me. I, truly, physically, could not get out of bed. I had just lost my insurance and was in the process of getting another. And of course, I ran out of my medication. The cost was over $350 for a month's supply. We could not afford it since I could not work anymore because of Fibro fatigue, pain and the unknown demyelinating condition. So, I was cold turkey off my antidepressant.  (Never ever, ever, ever, EVER do!) That was the most God awful experience in my life! When taking Effexor and you stop it cold turkey, you not only create a MAJOR depressive episode, you have physical withdrawal symptoms. Nausea, dry heaving, tremor, electric shock feeling. I could not get out of bed. My body would not let me. I cried so hard and I don't even know what was wrong. I was so distraught. I would not and could not eat because I was so nauseous. I just cried in my bed. After a 2 days of this, my hubby knew I needed help but felt stuck because of no insurance, lack of money and was in fear of the worst. So, he scraped together enough for a weeks supply and prayed the new insurance would kick in before I ran out. Luckily, it did kicked in.

Many people do not seek treatment for depression because, I think, it makes you feel ashamed. You are supposed to be able to sail right through life. No problems. No worries. You feel as though you are judged like you are crazy or weak. For years, I just sucked it up because "What did I have to be depressed about?". I had a great job, awesome kids and finally a really good marriage. So, what did I need the meds for? So, I would be on the meds for awhile and then stop. Get depressed. Put off going to the doctor. Until, it started causing problems my marriage. I shut down. I shut myself off. Easily angered over stupid things. My hubby came to me and said "Jenn, something has to change. I know you are depressed again. You need medication. It's okay and I love you". Ever since then, I have taken my medication faithfully because I know that I need it.  I especially knew that I needed it after going cold turkey. Never again!

I mentioned that I would be on the meds for awhile and then stop. This too is a big problem with people not only with depression but other mental illnesses. A person will have a depressive episode, get on meds and then do great. After awhile, that person, will stop the meds because they think they don't need them anymore. BOOM! Big depressive episode! Unwittingly knowing that the reason you felt so great in the last 6 months is because of the medication!
Depression is NOT "oh woe as me! I am so sad please feel sorry for me!". Depression is  not something you can simply "snap out of". It does NOT go away if you "would just get out of the house more" or "stop feeling sorry for yourself". There is help. (Heck, you can even send me a message. I will do my best to help you!)  Depression is real, is terrible and definitely misunderstood. But you don't have to hide anymore!!!!
Hugs!
Jenn

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Q & A with my husband about his view on my illnesses

My blog is mostly about how I feel and what I think. So, I decided to ask my husband how he has felt or feels about me being ill. I actually learned a few things that I didn't know and maybe you can share this with your spouse or loved one.

Q: Before I was sick, how was I, our marriage and life?

A:You were an outdoor person. Camping, yard work, fun with the kids. Lived at walmart lol. You were an extrovert. In the beginning, it was all about each other and the kids. So much love and fun. We never argued or fought. We are not well off but we had what we needed. We saw eye to eye on everything. We understood each other. We did what we wanted.

Q: When did you start noticing a change in me?

A: When you were 32. Rashes came more often. Sweats and RLS and PLMD. Heat was affecting you more. Fatigue was more prominent with heat. You would crash, sleep for 3-4 hours after an activity. You were still independent, mobile and doing your own thing. Good agility, dexterity, cognitive ability and multitasking skills were still there. Then it started to slowly progress with an increase in fatigue, muscle spasms and cramps in your back. Optic Neuritis hit Christmas eve. Then the big flair 2 years later that ended your career.

Q: What worried you the most in the beginning?

A: The fatigue and lupus in the beginning. We were not sure if you had SLE and really couldn't get answers from doctors. This sparked worry and depression in you which created barriers between our relationship. You started sealing yourself off. You didn't want to talk about it, ever. After the optic neuritis, and many, many doctor visits and still no clear diagnosis at that point, you closed yourself off to everyone. You felt as though you had to explain how sick you were, repeatedly. You were trying to get people to believe you because you didn't physically appear sick. To me it was confusing because the doc say it was depression, anxiety, you needed to reduce stress and exercise and you would shut down and get pissed off. Then the kids didn't know what to do. The kids were young and they didn't understand that this is a demyelinating condition. Kids thought you were going to get better. "When is mom going to get better" Sis would ask me. But to me our love seemed to be behind barriers because you were trying to except everything that was going on. This fueled your depression. So, that shut me out even more, Our communication and understanding of each other started to deteriorate because I wanted in and you wouldn't let me.

Q: When did you notice a cognitive decline

A: Right before the big flair. You would come home from work crying because you could no longer multitask, forming words and thoughts, memory was slipping and you had to actually think about walking. That was very disconcerting due to the fact that the cognitive decline followed your optic neuritis flair and you had to think about taking steps. Moving your legs and you needed assistance with walking. Your short term memory is slipping. You repeat stories, conversations and incidents. Worsens when you are fatigued. The first thing that came to my mind, MS, which my uncle passed away from. For me, if it is MS, is the long term, slow progressing MS?  Is it the rapid progressive MS where we only have a few years or was it SLE? I didn't know how to explain it to the kids.

Q: The big flair

A: That day, I was really, really worried because it hit you so fast. I was thinking SLE or rapid MS. We had nothing set up. We were not ready for it. We thought we had a few years. Financially, because that is the jump in my mind because you were the breadwinner of the family and rushes through your head when this happens, "Holy shit! I'm freakin out!" In today's society, you need 2 paychecks to stay afloat. What are we going to do? Depression increased because you could no longer work. Cognition diminished significantly. You went to a multitasking situation to one thing at a time.You had to go from thinking like a woman to thinking like a man! LOL One thing at a time. You could never get rested. Fatigue was getting worse along with the pain and muscle cramps. Weird sensations in hands and legs. Barely walk to the bathroom without assistance and walk back to bed.

Q: My depression, anxiety and short fuse...
A: One fuels the other. There were days that depression was bad, anxiety was off the chart and you're fuse very, very short fused. Any noise from the kids would set you off. We needed to get the depression under control because it was really going to hurt our marriage. Communication was nill. Seemed like a "need to know" basis. You wouldn't tell my unless you absolutely needed to tell me. You are the QUEEN of bottling it up.

Q: Our sex life, then and now
A: Before...WOW and YES PLEASE! That was before you got sick. It was extraordinary! Slowly decreased as your illness progressed. Now... if the moon and the stars align perfectly and the mood hits you just right...I might have a shot or I'll get shot down, which is probably more likely. You are rarely in the mood. We can't do it in the morning because that would physically ruin the rest of the day. By the time evening comes around, you are too tired, in too much pain or just not interested. But when we do, we have modified our sex life to suit your abilities. (This is Jenn...what hubby is trying to say is that we have breaks for me to rest. Try to fight off fatigue and the "weighted" feeling. Don't forget about the vertigo at times. Certain positions are impossible and frustrating, so why even bother with those. We do have great "modified" sex...when I'm actually in the mood)

Q: And now, after all of this...how are you feeling with everything?
A: Our relationship changed after a big blow up. "Blow up" was due to many factors. Money, depression, medication, loss of your independence, loss of your control of your life. Since then I have been the caregiver, father, chaperone, breadwinner, husband, shoulder to cry on, friend (after KIM of course lol). I think we understand each other more. Now that the kids are teenagers and they have dealt with illnesses of their own, they have a better recollection of what mom goes through. They also have a better understanding of your abilities and try to help you as best as expected from a teenager lol. Our marriage is good. We are moving along. No severe progression of your illness at this time. We are grateful for that. We finally found a few doctors who are helping you get sleep, pain relief and your depression under control.

Hugs!!

Jenn

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Planning to go out of the house...not as simple as you might think

I am a homebody. Hermit. Introvert. Recluse. You get the point. I prefer being at home, in a quiet, dim room with all my necessities (iPad, laptop, phone, tv remote) within arms reach. As I had said before in my other posts, it is EXHAUSTING getting ready to go somewhere.

Here is an example of my planning for which I hope you can relate:

1. When are we leaving?
1. Let the planning begin!! 
2. If I have to take a shower, I need at least 2 hours so I can rest between showering, then rest, getting dressed, then rest, blow dry hair, then rest. 
   
2. How long will we be? 
1. Fatigue plays a big part. 
2. Not to mention the pain.
3. Again, the FATIGUE!
3. How long is the drive? 
1. Being in the car too long is also plays on the fatigue. 
2. Sitting in the passenger seat for too long plays on the pain.
4. What should I wear? 
1. Can't be heavy clothing and can't be light clothing. 
2. Layers preferably. 
3. Socks optional.
5. What is the temperature outside? 
1. Can't go if it's too hot (fatigue, Uhthoff's, general yuckiness, short fused). 
2. Can't go if it's too cold (pain worsens, Raynauds flairs, Livedo Reticularis increases). 

   

   I couldn't help it lol

6. Should I grab my meds for my next dose? 
1. Refer to #2. This should really be a given.
7. Is there going to be a place that I can lay down? 
1. Seriously, I do think about this. Because when the fatigue hits, I must lay down!
8. How many people are going to be there? 
1. A large crowd talking, crawls under my skin. 
2. Makes me physically ache. 
3. Makes me short fused, annoyed to where I just want to yell "OMG shut up!!!".
4. Conversing fatigues me.
1. Makes me mix up words with other words.
2. Makes me flustered (Thanks Sis for the suggestion)
3. Makes me forget what the hell I was saying.
5. Makes me feel like running out of the room. Well, If I could run lol
9. Loud music playing? 
1. Refer to #7 2-5....same feeling
10. Who is going to be there?
1. I find that since I have been sick, the"bite my tongue filter" is gone. So, with certain people, I just say what I think and don't really care. So now, I tend to avoid those certain people.

So, as you can see that just preparing to go outside of the house is exhausting in itself. It is frustrating and can get depressing. Some days, I feel that it just isn't worth it. I'd rather stay home in my little bubble.

Of course, these are some examples because I am sure that I am forgetting something.
Hugs!
Jenn

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#standwithjetta peaceful protest at her school this morning!

There was a peaceful protest this morning at the Dayton Charter School where 10 year old Jetta Fosberg attends against bullying. As you may recall in my previous post, Jetta decided, on her own, to cut off 14 inches of hair and donate it to Wigs for Kids. An organization which creates wigs for children who have lost their hair from cancer treatments or other ailments. Since Jetta has done this, she has been bullied for weeks at school and the school is not acting appropriately to address the problem. Jetta's mom, Heidi, decided to reach out to social media and the outpouring has been amazing!

Jetta and her mom, Heidi

Now, since the Dayton news groups are involved, the school has decided to have an investigation. Well, isn't that something. All of the sudden the school is now concerned? (Please note sarcasm) I especially love the principal's comment that he "didn't know of any child that had ever died from words". Hmm... What about suicides? What about school shootings? He must not keep up with current events? Hopefully he is getting an earful now from his bosses! Hopefully!!

We will always #standwithjetta and we will always fight against bullying!

My own daughter missed school this morning to go stand with Jetta!

Hugs!!

Jenn

Just in case you missed it, here are a few news links!

WHIO News Dayton

KRMG News

WKEF Dayton

Fox 45 Dayton

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Fed up and my boiling point!

I kinda had a melt down the other day. Well actualy, I just blew up. My usual smiley face and my lies of "I'm doing pretty good" went away and I just couldn't keep it together anymore.
So, I am tired of the following:

1.  Being sick.
2.  Being in pain all the time. 
3.  Fatigue. (I really hate you!)
4. Of my mind telling me that I can do things for which I cannot do. 
5. Of my house being a mess. Laundry not done. Dishes not done. Bathroom not painted.
6. Tired of having to decide if I want to shower today or go to the store. I cannot shower and then go to store. Oh no! I have to shower. Rest. Put on clothes. Rest. Maybe then I will go to the store. 
7. Of calculating if I go out of the house: How long I should be gone? Will there be a place I can lay down? What type of clothing should I wear because with my interal "thermostat" being so screwed up that I can't get too hot because I feel like I am going to fall over but yet I can't get too cold because then my joints and muscles ache? Is it too sunny? Because God forbid me being in the sun because of the stupid Lupus. Just planning to go somewhere is just exhausting it's self. I stop and think if it is even worth going out?? But I am so tired of being in the house. I am tired of looking at my bedroom walls. I hate that I am always in my bedroom. I do go in the living room for a change of scenery but it is usually not for long. Because of what? Because I'm tired, fatigued, in pain or getting short tempered.
8. Of feeling tired. There are even differences in my tiredness. UGH!! Tired can be just tired. Tired can be sleepy. Tired can be fatigued. There is even a "tired" that I can't even explain!
9. Of being indecisive. Terrible time making decisions anymore. If you only knew how many times I have edited this post! (Changed the title 4 times lol)
10. Of depression fueling the pain and the pain is fueling the depression. Along with the fatigue fueling the depression and the anxiety fueling the pain in which really frickin depresses me.
11. Of not driving. Again with the fueling! Not driving fuels the fatigue to where I cannot judge distances which totally ticks me off because I miss just getting in my car and go where I want and I don't have to wait around on people to take me somewhere for which I have already calculated my trip.
12. Of not having my paycheck. Along with my weekly trips to the store to get what ever I wanted and spent how ever much time I wanted in the store.
13. Of not having my career. I loved my job and I was good at it. It made me feel important. Made me feel like I had a purpose.
14. Of the loss of independance that I fought to have for myself.

Some times it is so hard to put on a happy face. Am I having a pitty party? Sure! I can see if you are a person that is lucky enough not to have a chronic illness, so you can call it that. Or how about a woman who is just sick of feeling this way and that is ALLOWED to break every once in awhile. You can only take so much before you reach a boiling point. I have reached mine. I hope that you can relate!

Big Hugs!

Jenn

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NO MORE BULLYING!!! #standwithjetta

You know, I blog, just about anything. This really touched a nerve. I think because I am a mom, with my own teenager, I was a teenager one time (very long time ago lol) or simply because the bullying in today's society has gotten out of hand to the point where these poor children have no where else to turn so they kill themselves. This brings me to my husbands long time childhood friend who has a 10 year old daughter, Jetta. Jetta decided that she wanted to cut off her long, beautiful hair and donate it to Wigs for Kids. Wigs for Kids is an awesome program that takes donated hair and create wigs for children that suffer from the awful side effect of hair loss from chemo treatments. Jetta cut 14 inches of hair off!! As Jetta returns to school, she is berated with comments from her classmates. "You're so ugly, I want to throw up when I look at you." and "You are the ugliest girl in school". So, what was her teacher's response?? "Just don't listen to them."

Really??? That is the best you can do Miss Teacher? Don't listen to them? What happened to the "Zero tolerance policy" that is supposed to be in place in all the schools? Do you not remember all the children's lives that were cut short by suicide because of bullying? What about the innocent lives that were taken from children shooting up schools because they were bullied and educators like your self, did not do a damn thing? Do you think that will NOT happen in Dayton, at YOUR school and the best you got is "Just don't listen to them."??
Now, let's take a look at the law, shall we?? According to stopbullying.gov :
          C. Investigating and Responding to Bullying Includes a procedure for promptly investigating and responding to any report of an incident of bullying, including immediate intervention strategies for protecting the victim from additional bullying or retaliation, and includes notification to parents of the victim, or reported victim, of bullying and the parents of the alleged perpetrator, and, if appropriate, notification to law enforcement officials.I'm pretty sure "Just don't listen to them" is a NOT part of "Investigating and Responding to Bullying".
By the way... "Schools refusal to recognize bullying violates the Ohio Law prohibiting bullying."
Dear, sweet Jetta. Cutting your hair to give to another child is the most amazing gift. Your generosity is awesome! The horrible, selfish, insecure, feeling threatened by your beauty, jealous little twits will reap what they sow one day. You keep your chin up! You are the one who made a difference in someone's life by donating your hair. We should all learn your generosity!!

Hugs!
Jenn
#standwithjetta
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