Do insurance companies really think when we switch to them that patients need to start their treatments over? I just switched (the insurance is thru my husband) the beginning of the month. One of my meds needs to be pre-authorized. Fine. The doctor sent in the request. It was denied. I have been on it for 2 ½ years! It was just increased and found the new dosage very helpful (for once). The insurance company thinks I should try something else (because it’s cheaper). Excuse me, tried others, bad side effects, I’m not going there again when THIS HELPS!!

The stress of this event was enourmous to me. To struggle with a chronic condition, finally start getting some relief to be faced with this. OY! After much back and forth the doctor got it approved. Thank you God! I really tried to just turn it over to God, let it get worked out. Of course this was AFTER I got uber stressed and upset. Let me tell you this does not help. Stress like that makes my pain, fatigue, and my cognative abilities all worse. I get anxious and moody. My husband luckily is starting to see the signs when I get like this so he knows not to take it personally! He just lets me vent.

So now I have to reduce my stress…..uh huh. Easier said than done. I have found prayer a very good stress reliever though. Giving all the stressors over to the Lord and talking to Him keeps me calm.
That’s my rant and advice for today!

Thanks for listening.

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A few months ago I started kickboxing class. I absolutely loved it! I was so exhausted afterwards I couldn’t do anything but sleep. I wondered “Can I really do this?” After the first few classes I could come home and not pass out for hours right away. I finally found exercise that I liked and wanted to do. I was able to make modifications so I could keep up. My balance was off but I pushed thru. When I had my time of energy (loosely using that word!) it lasted longer before I had to take my nap. I was proud of me!

And then my hips started hurting. I couldn’t do the roundhouse kicks. Ok. No problem. More modifications for me. Keep pushing. Until I hurt so bad I had to stop. I went to the doctor and had x-rays done. Follow up with an ortho, they may want an MRI. So can’t do the class anymore. Sigh.

Why is it just when you think things are gonna go a certain way…..they don’t? I am not so good at motivating myself. I get bored with exercise equipment (but may end up back to doing that). It seems there is always some kind of health issue getting in my way! It is very frustrating. At first I felt very let down. Sad to stop doing something so good for my body and mind. Now I have to find something else because not exercising at this point is not an option. It is such a hurdle for me. My pain is always present as is my fatigue, just worse on any given day. So a gym does work for that I suppose. I just have to get myself back on the horse. First I have to find the horse.

I know God has a plan for me. I only need to open myself up to let Him work in me. I will open up for it. However, I am an impatient human being. Aren’t we all?

Guilt

When I was younger, I thought “disabled” people were sullen and miserable. Because how can someone like “that” be happy? Now that I am one of “THEM”, I find many reasons to push passed the things that, if focused on soley, would make me miserable.

I often wonder what others think. “If she can’t work and has that many issues with her health, why would she go to the shore? Or kickboxing class? Or a party?” Not that anyone has said those things, but again I think back to the younger me.

Let me tell you some days it is hard to get out of bed. Or make a meal. Or walk, talk, think, or any number of other normal things. But I push myself everyday to be able to do “normal” things if even for a little while. Then I rest. A LOT! I have to nap at least 6 days a week just to get thru the rest of the day.

I have found myself feeling guilty. Guilty that I let myself have fun. It sounds strange doesn’t it? ALL people should be able to have fun, go out, even if it is only for a little bit. Not to worry what others think, hard as that may be. But I do. I feel guilty when for an hour I meet a friend for coffee while my husband is busting his butt at work. Or that I am going to an exercise class while my mom goes to take care of my sick grandmother. Things I should be able to do sometimes still make me feel that way. Almost like I feel guilty for living instead of wallowing in my disease. It doesn’t make sense, but then again feelings don’t always have logic.

I wonder if others feel guilty that I have MS, fibromyalgia that causes pain, gait problems, cognitive problems, etc. They shouldn’t. I hope they don’t. To be healthy is a blessing. Sometimes being unhealthy is a blessing too. It makes one appreciate all the little things.

Feeling alone, helpless, weak
I struggle to be strong.
I struggle to BE
My body does not do what I want
My mind does not keep things around
My will is strong though I feel weak
My desire to BE drives me
My desire, my need to be Mom, Wife, Friend
It is all I have some days
I give my all, it looks like I don’t
I fight the pain, I appear lazy
Looks can be deceiving
I look well, feel like hell
God gives only what we can handle
Do I doubt God? No. Do I doubt me? Mostly
I won’t give up, I won’t give in
But I give and give and give
Just so I can live

I’m glad you are so candid about your health. It makes it easy to ask questions that I might not ask others.

So this is my question for today. People say the dumbest things or they don’t say anything. What are some examples of things that others have said that you thought were really good comments. That made you feel like they cared even if they didn’t fully understand. That would be really helpful to me!!”

This was an email I received from a friend after reading my latest blog. The first thing I thought (and responded to him) was the feedback I get after someone reads my blog. It makes me feel that they want to know or understand just a little bit.

I cannot think of a specific statement that has been made. I was at my girlfriends the other day and our kids were playing. She read my blog and couldn’t believe some of the stupid things people say to me. Just her talking openly with me, asking me questions and really listening to the answer, that was awesome. She, like most people (and it isn’t necessarily wrong, we all do) get caught up in their own everyday life and struggles. So when they do get to be with or talk to their friends with invisible chronic diseases, it isn’t always right in their face so to speak. So when she realized my struggles were no small task, she really was interested. THAT makes me feel like she cared.

So it seems, the more I think on it, that actions really do speak louder than words. Unless those words are, well, stupid. (I usually forbid the words stupid, dumb, and hate in my house). It is more obvious when someone says something without thinking that downplays what I go thru. It is still nice to have people ask how I am, and I know full well I am not going to go into great detail. I usually answer and gauge on my “normal” and use that as my base for my answer. Now seeing those who ask and listen, those actions can show more that they care, that I matter and am not so alone.

I hope this helped some my friend. And thanks for asking!!!

You know they just don’t get it. Talking with people and trying to explain how I really feel on a daily basis. The pain and aches. Fatigue like you can’t imagine (unless you live it). The cognitive problems that aggrivate me to no end, make me feel crazy. Unless you have a chronic illness that lets you experience it first hand. It feels like you get blown off since it can’t be seen.
What would people think if this were to happen?
A woman sees an old friend outside a café. The friend is wearing a bandana around her head.
Woman: “Hi there (insert name)! How have you been?!”
Friend: “Hi! I am doing a little better now. I don’t know if you heard but I have (blank) cancer and started chemo.”
Woman: “Oh no! Well you look pretty good! My (fill in relative) had that last year and is doing great. I am sure you are too!”
Friend: “Yeah, well it has been touch and go, but we are hopeful.”
The woman then continues on about all kinds of things, leaving the friend to wonder if the woman heard her at all. Cancer is a life changing thing. Just because one person did great, not all do. The pain and stress, nausea, hair loss, so many things she is going thru, this woman just doesn’t get it.
Now I for one would be a little upset to be put aside that way. Come on, right? How can you blow off something so obvious and life changing?
Well, for those with invisible chronic illness (like Multiple Sclerosis and Fibromylagia in my case) it happens all the time. ALL the time. And by those closest to you. They just don’t get it. How can you make someone understand that not finding a word can be so frustrating, almost painful? On a regular basis too. I think my gram starts to get it since she had a stroke and is not always able to think of everyday words (chair, TV, phone, names etc). It is so beyond everyday “oh what did I come in here for?” or “I just can’t think of what that movie is called” types of days people get. The pain is more than I describe some days. Fatigue is more than I am tired. (I often get “Oh I wish I could nap every day!” I wish I could have the ability to no need one everyday!)
I think some days I just don’t bother wasting my energy on explaining. Why? I just don’t have the energy to spare. I use most of my energy pushing thru the pain and fatigue to get dressed, feed me and my daughter, spending time with her and my husband, my family. I get help from my mom and hubby, my daughter too. There is the understanding I need help, just not what I am actually going thru) If I can do nothing else, I want to be with the ones I love. Even if they don’t always get me. Just another part of the illness.

Summertime. Kids are out of school. The PERFECT time to do fun things with my daughter and mother who is retired and can this summer. Awesome, right?! Yeah, warm (hot and humid in the northeast thanks) days, ummmm not so great. The humidity is killer on my lungs (yup asthma rocks!) and the heat just does not help the MS symptoms. I have already had to cancel a day trip to Philly recovering from one night away with my mom & daughter. Walking a lot alone does me in good, add the heat and whammo! Done.

Just as I start to think I am figuring out how to pace myself, the weather change throws me for a loop. Going in the pool is great. The cool water keeps my bodytemp comfy. I can swim with less pain and all that. Downside,I am usually in the sun to do this. And the fatigue and pain that comes after is my version of a really bad hangover.

So wish me luck! The balancing act continues….

So I am always up for new information. A lot of times something to help get me thru. God leads me to great things. So many tools in scripture when I take the time to look. Even things to help with getting thru my chronic illnesses. I find a lot of times it is thru prayer, my time with God gets me thru everything.

That being said, I have found online two things that help me explain to others how I feel, or what I have to go thru. (God didn’t specify a lot on MS and Fibromyalgia in the bible, so there is the internet to help with that). There are two links below. The first is ever-growing in popularity. It is The Spoon Theory (by Christine Miserandino). I am a spoonie!!! And I am SO not alone. We are all different, but so alike too. It is a great way to explain how fatigue (and pain, etc) effect everything we do as people with chronic illness.

The second I came across and LOVE just as much. An Open Letter to Those Without Invisible Disability or Chronic Illness by Jerry Salois Sr. MSgt USAF Ret. I like how in one part it describes the difference between HAPPY and HEALTHY. That is something I always struggled with (and still do). I almost feel guilty when I am happy. Did (does) being happy mean I feel fine? NO!! Why do I feel guilty? I don’t know. It’s almost like being happy negates how I physically feel but it doesn’t really. If I am happy I should feel great right? But it doesn’t make me feel great or even good physically. I still have pain, weakness, cognitive issues……it doesn’t just stop. LIFE doesn’t just stop. This so hit the nail on the head for me. I have the right to be happy even if my hands don’t do what I want them to or I can’t think of the word chair when I tell my 7-year-old to sit on the…… (yeah that thing ya know?).

Tools like these are immeasurable. Online tools. Biblical tools. God has given me everything I need. You just need to use all the tools He gives!

http://notdoneliving.net/openletter/id

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Physical touch is a human necessity. I’m not talking sexual intimacy. Just….holding your childs hand, or hugging an old friend. So it’s hard when a small childs hand, well, hurts you. Or the hug does. That happens to me. A lot.

I am told fibromyalgia mixed with the MS causes all kind of fun stuff. A lot crosses over between the two, etc. Al I know is it kinda really sucks.  I finally sneak a good long hug from the hubby in the kitchen, you where the 7-year-old DOESN’T come in saying “What about me?!” Rare. Great big hug and oy…and OW

I get severely bad pain in my hands and feet. My daughter is pretty good with my MS “stuff”. She has trouble grasping the pain part (she is only 7).   So it hurts more than physically when I go thru this. Sometimes I suck it up so I don’t hurt her feelings. Other times, I have to loosen her grip, gently remind her and hope for the best. Or when she attacks me with hugs. Oy and OW again!

It is hard with others. Many people don’t know how bad the pain is some days. It isn’t like I walk around with a sign saying “Sunny today, but the pain is sever. Try not to hug unless necessary folks!” or anything. I have found talking to others with MS (or even some other diseases for that matter)

     1) Don’t want to seem like we are complaining all the time (But still need to let them know how we are feeling so people know and can help)

     2) We don’t really want to ask for help (even though we need it)

Just another fun fact I guess. Yup, I take meds for it and they help. But there are bad days with the good (like writing a blog that comes to mind and won’t leave at 2am!). So if I see you and don’t hug you…or don’t hug you tight…please don’t be offended.  And please don’t hug me tighter. Oy and OW!

🙂

So how do I feel? Tired, achy, having pain….my normal (that I push thru every day). On Wednesday I kept loosing my balance. Almost toppled my daughters breakfast on her! So, it became a cane day. I was given a field vision test. Never thought an eye test could be so exhausting!! And I didn’t nap. Not usually a good thing for me.

I am happy to have found a chat room on MSWorld on my iPod. Really nice to just talk with others who have MS about symptoms, how we feel about others not getting how we feel. For example:

     one hand: don’t want to complain all the time about pain, fatigue, etc for that day.

     other hand: want people, especially those close, to know how you are feeling so they can help (or adjust their expectations)

     one hand:  don’t want to ask for help all the time

     other hand: not asking for help can leave me in worse shape, maybe for days because I then do TOO much.

See, on my GOOD days I am sore, achy, pain in hands and feet are severe,and I am fatigued. I need a 1-2 hr nap every afternoon to get thru the rest of the day. That is my norm.  I found it worse when I couldn’t take my meds for a few days. Now I know how good they do work! Thank God for them. However, my norm would be unbelievable to someone “normal”. Most people don’t wake up feeling like they ran a 48 hr marathon and just finished 5 minutes ago. I have to conserve what I do so I have enough energy to finish my day. As of yet, I am not real good at that, but I am learning. And it is frustrating.

I spoke with my chat friends about spouses. The consensus is they try. My hubby works all day, physical work, no a/c or real heat in a warehouse, and is tired. It is hard for him to understand that how he feels at day’s end is what I feel like on a REALLY GOOD morning. I don’t know that I would have 10 years ago. Then you start getting hit with the MS fatigue (I struggled with off and on for a few years before it became consistent then diagnosed). UGH! Now, I get it all too much.

Am I angry? Sometimes. I feel everything happens for a reason. God does have a plan. We just don’t know what it is.

Does it suck? Absolutely! But there are worse things. MS is not fatal. I just need to adjust to my new “norm”. If and when things change, I will have to adjust again.

Life isn’t how I planned it. How often is it? Trying my best to live it. One prayer at a time.

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