“Your talking out the side of your neck”/10 Things NOT to Say to A Person With Lupus

Here are some of the annoying things I have heard over the years.

10. You use to be so thin.

(I know…don’t remind me.  *looking at my bulging stomach and yeast roll feet*)

9. You don’t really need to take all that medicine, or you take too much medication.

( I have had people to tell me to stop taking my medicine and just pray, have faith and ask for healing. Ok, I will stop taking it and just go ahead and die. Doctors aren’t of the devil. GOD can provide them with knowledge to treat me. Also, GOD may decide not to heal me. Sometimes we don’t get what we want. You think I haven’t prayed for healing ?)

8. You need to go natural or try this natural _______.

(You don’t know what you are giving me.  Someone was trying to give me some immune booster, not realizing that it would have killed me almost immediately. My immune system is going haywire and attacking my organs willie nillie. Why would I want it to boost me into the grave yard? You are  not a doctor. You don’t know how it will affect my condition.)

7. I have a friend/family member with Lupus, but they died.

(Thanks for the encouragement.)

6. Man, you are always sick.

(Believe me, I hate it more than you.)

5. Are you ok?  Or  Are you getting any better?

( In some instances it is ok to ask how I am feeling, but not when you have the pity face to go along with it.  I will never get any better. I have a chronic illness, meaning I will have it for the rest of my life.  I have good days and bad days. It doesn’t mean I am getting better.  When you see me limping or wincing from pain you will think I have one foot in the grave again.)

4. Have you ever tried to ignore your pain?

(Believe me, I ignore pain everyday that’s why I am able to function. You have no idea.)

3. There’s nothing wrong with you. It’s just in your head.

(Now I am crazy?)

2. I understand what how you feel. I have arthritis in my _________.

( You may think you are making me feel better telling me I am not alone but you are minimizing my pain by telling me you deal with it and you are doing just fine.)

1. Well you don’t look sick.

( Just because I don’t LOOK sick doesn’t mean there is nothing wrong. Maybe I should limp a little harder or start foaming at the mouth to look more believable.)

Brandi  :/

 

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“I Get So Weak”

Hey guys! It has been a minute since I have posted a new blog. I hope you are keeping cool in this blistering heat!  I have been trying though I am not always successful.

In the past weeks I have still  been trying to  rehabilitate this “new hip”.  My therapist feels that I am doing very well considering having my leg hacked into so many times.  I still have considerable weakness and it is taking longer than I expected for it to get back into working order which has been VERY frustrating for me.  I need to get this weight off that I have gained from those immobile and barely mobile months. Due to the weakness and the fatigue I have been experiencing my excercise plan has remained in the planning stage.  I have maybe two more physical therapy sessions scheduled and that will probably will be it.  I have to find a replacement to keep me active and work on improving my hip.  Water aerobics is the idle transition but I haven’t found one in the city that I could attend weekly that my wallet likes. The Lord knows what I need and he will provide.

Fellow Lupies, try to stay out the sun and don’t forget sun screen. UV rays  ( inside or outside exposure) are no fun neither are flare ups so protect yourself as much as you can.

Brandi  🙂

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A Pitiful Case of the Pits!

Sun and Moon clip art

Sometimes having lupus is the pits!! Lately I have been dealing with  sun-sensitivity, a horrible case of restlessness/agitation and daily bouts with insomnia.  I keep telling myself I have been through worse but it still hasn’t changed my mind about the fact that, sometimes having lupus is the pits.  I am very agitated  about being agitated, to sensitive for my sun-sensitivity and  to sleepy to do anything about it!!

Lately the sun and I have not been getting along.  Even a few minutes in the sun and I feel like I have a sun burn with horrible fatigue and joint pain.  I have always known about sun-sensitivity and lupus but I never had any problems until this year.  I think I am making up for lost time or something. The WRATH is upon me!! Most days I am held hostage in this house trying to duck and dodge any kind of sunlight, which adds to my frustration dealing with the restlessness and agitation because I am stuck in this house.

So now it is 10:00pm. I just finished pacing the hallway for the 10th time tonight. It is going to be a long night. Of course I am not sleepy. I am wide awake, restless, agitated with a sunburn that doesn’t exist. Yes, sometimes lupus is the pits!!

 

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R.I.P (The Death of a Friendship)

It is starting again. Me and my best friend are at an impasse right now.  It seems like all we do is fight. I have tried reasoning calmly but it seems that nothing is getting through. I miss the time we use to spend together. It hurts my heart that we can’t work this out. What do I have to do? I am tired of begging and pleading for some reciprocity.  It seems like I am always at the losing end.  I have been willing to do what ever it takes to improve our relationship. Am I the only one who cares?  Everyday I feel like I am being slapped in the face. I am totally being disrespected, yet I still have hope that we can work this out. Maybe we need to talk to someone.  Maybe they could be the mediator so that we can resolve our issues.  I’ve tried everything else so this has to work. If it doesn’t I don’t know what I will do.

If you are listening I love you too much to just let you go, but I am tired of you disrespecting me and not treating me the way I should.  I really hate to lose you as a friend but you are really making it hard for me. I can’t just keep this to myself. I need to talk to someone about this.  It is causing me to much stress. It’s time I get some professional help or I won’t be able to make it. You are driving me crazy! I don’t deserve this.  I have been nothing but a good friend to you.  The stress is beginning to be too much.  I hope we can come to some sort of compromise. Regardless of how things are right now I just want to say , SLEEP I love you and I miss my time with you. I hope I hear from you soon. Don’t let INSOMNIA get between us and tear us apart!

Love  your old friend,

Brandi  😦

“Let’s Get It On!” : How to Have a Great Sex Life With a Chronic Illness

hearts clipart love

Living with a chronic illness effects every part of your life.  You may be affected by daily pain.  There may be issues with chronic fatigue or side affects from medication.  Some may suffer from depression due to the stress of  day-to-day existence, or loneliness due to loss of friends or the loss of independence.  There may be changes in your body that affect your self-esteem.  Due to these factors a person who once had an active sex life may find that they know longer have the desire anymore.  This can put a strain on your relationship with your partner.  Don’t forget your partner is on this journey with you. The may not experience all of the physical manifestation of your chronic illness but they are there with you through the day-to-day and are experiencing the highs and lows of your illness.  They too are experiencing a loss of the person you once were and the relationship you once had.  A once happy relationship may start to show signs of cracks and strain if there is not honest communication about both of your feelings especially those regarding your sex life.  It is best to communicate these feelings before either of you begins to feel resentment about the lack of sex and intimacy in the relationship.

Just because you are sick doesn’t mean you must live a life of celibacy.  With a few changes and compromise between you  and your partner you can continue to have a healthy sex life.

– Pick a time of day when you feel your best. If you take pain medicine make sure it has time to take effect.

– If your medications affects your libido talk to your doctor.

-Experiment with new positions and use pillows to help relieve pain.  Be creative!

-You doesn’t always have to have intercourse.   You may not always feel your best no matter how well you prepare. You may only be able to cuddle, kiss, or massage each other. Find other ways have a close intimate connection with your partner without intercourse.  Have fun exploring each other’s body.

-Last, keep open communication with your spouse. It is going to be a trial and error journey.  Work together to find out what is best for both of you while still fulfilling each others needs.

Just because you are sick you don’t have to sacrifice sex and  intimacy with your mate. Certain things may have to change but remember that you love each other and that your relationship is worth it!

 

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Finding My Smile :)

This sing has been on repeat all day today. It was really hard to smile, but I managed a few. I have  had two rough days battling lupus fatigue and pain from my hip replacement. I have spent all of yesterday and the most of today in bed snoozing the day away.  Days like this are always hard.  I sometimes hard to fight off the guilt for not being able to do “mom” things or “wife” things.  I can’t clean my house and it really needs it. I can’t cook dinner for my family or fold the laundry that is piled up the wall. Days like this are always filled with many emotions.  I just try to keep in mine that I can’t do everything today.  I will get another chance tomorrow to make up for my limitations of today.  I know it’s hard to not think about all you have to do, and who you have to save today but you can’t be there for someone else if you aren’t  there for yourself first. ( I am typing this for myself today as well as for you.  I need to see this in front of my eyes and not just go by what I am constantly telling myself today.)

I went to physical therapy today.  I have had all kinds of therapy over the past 11 years.  I have heard different philosophes on what is best and why. This is the first time I have been to therapy and haven’t kicked a leg, had to do squats or had a thera band thrown in my lap.  Nesin Therapy Services is very hands on.  The past two pt sessions I have laid on the mat while they have massaged, pulled, pushed my hip in all kinds of directions. It is very uncomfortable, and I stress very,  but after an hour I could feel the results once I got down to walk.  It’s something I am not used to but thank God it is working.

The rest of today is still to be seen.  I am in pain right now.  I have zero energy and had to ditch my “super cane” for my wheelchair but I am pressing on. 🙂 After all I am a survivor.

 But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint.  Isaiah 40:31

Thank you to those who prayed and thought of me today. Your prayers are appreciated.

Brandi 🙂