Saturday, November 27, 2010

Safe Place

If you have read my previous posts you see I sometimes say, it feels like there is "No Safe Place" with Scleroderma....

That one secure, safe place. A place that is stable and we know won't change (like our disease does so often). Where we don't have to wonder or worry. Where we can share how we REALLY feel? With whom? How much? How often? Can we be real or should be stay PC? Can we whine or do we lose our grace and dignity? Where? What? When? How often? With whom? Will they leave, get burnt out, judge, change, not be able to handle it? Label us?.....All those things and more.

Well, I was with my friend when she said...Stop. Pull over, I need to take a picture!!

And this is the pic:

I just had to share. It made me laugh. I LOVE it!

I haven't blogged in a little while. I have been feeling pretty good and getting into the spirit of the season.

I promise I will log on and get caught up....but for now, I just wanted to share a little autoimmune humor with you.

Hoping you are reading this with a smile on your face and in your heart!



The Bird is the Word!


Peace and Love

Monday, November 8, 2010

Rubberband Arms - Flare like you just dont care

Hi All ~

I have what I affectionately call "rubber band arms" today.

Basically my arms feel guessed it. Rubber bands.

No strength. Weak. Shaky.

Basically the analogy I use is; what you feel like after you have worked out hard core for too long, and your arms feel like rubber bands and you can barely lift them or use them because your muscles are shot.

THAT is what my arms feel like today. I dislike it very much. It has been a while since I have gotten an episode/flare this bad. To write this this very word has taken me 25 mins because I keep resting my arms because they are so shaky. It feels like a monumental task to life my arms using my shoulders - not as bad to lift my wrists.

I just wanted to post about it real quick because it IS a symptom I get and when I have posted about it on other sites, many people state they do too - Although it is never mentioned in detail in any literature.

I guess its bundled under "Muscle Weakness" - How bout puttin it under, hard to lift paper?

Do any of you get this?

I have that low grade flu feeling with swollen glands and I am EXHAUSTED... as in I took a nap yesterday and I never take naps!!

So perhaps this is a flare up? Was going to get a steroid shot, but my waist band said no (I'm at the point I have gained so much weight that when I bend over, my underwear is so tight it cuts of the circulation to my head! : ) Uggg

Anyway - I just took it easy today, got nothing done on my To-Do list and decided to post a quick blog about it.

I never knew this was a Big S thing until I posted about it, so I want to make sure I give it an entry.

Take Care everyone.

Have a rubber band free night!!

Peace & Love ~


Sunday, November 7, 2010

MR-I hate them..................

I have an MRI tomorrow for my ear. Yuk!

I hate MRIs - I am claustrophobic now (apparently) and once I get under the damn thing I have to itch, must move my arms, have a cramp, need to pee.... boy does my brain do a number on me.

I get that it is mind over matter and I am in control, but I think there is a Xanax with my name on it for tomorrow morning.

I even go to the open MRI and I am this bad. Seriously!

I had to get an MRI of the brain last year, so I went to the open MRI and found that it is open - but they strap your head to the table in this mask "Silence of the Lambs" style and it freaked me out.

I couldn't do it. The tech kept telling me how long it was going to be, could I sit still that long, I had to keep my head still and when I asked how long, she would not say, telling me it was better not to know so it would go faster............ and she was a tad gruff while saying it all, but I went to the table like a good girl and lay down. She told me to put the ear plugs in and put a cloth on my face, but I told her that those to additional confining elements would just make me feel worse. She didn't listen, as she told me she knew best - so I kept the plugs in and cloth on and wow.

I think I made it about maybe 7 minutes before I was dones-ville. The tech asked me if I wanted a "sitter" with me to hold my hand, and I said no. I asked how much longer and she replied she wasn't going to tell me and I could get through it to which I replied,  I just think I need to be done for the day and come back with an anti-anxiety med on board. But she kept me there, and my flight or fight kept increasing - and she kept telling me I know you can do this and I would say, no I don't think I can.. and she said No, you will get through this and can do it and by that time I was in full blown panic mode and yelled back "What I know is I want to get the hell of this table so let me out now" to which she responded by not so nicely letting me out and off the table, where I had to then proceed and make the walk of shame out of the building. Memories.....

Well, I did go back and requested a different tech with xanax on board, I made sure my head was in a good place and I did it! I was so proud that the girls up front (who were witness to my previous walk of shame) actually gave me a standing ovation and hugs. Ahhh...yes. I know how to make friends and have a good time.

Well, I had to pick up contrast from the same imaging center last week for my CT scan, and I did not see any of the old crew that helped me through the MRI last time, so we will see. Wish me luck.

I am going to get a good nights sleep and pop my xanax around 7:00 for my 8:00 MRI.

Send me good, calming and relaxing vibes.

Mind over matter - Mind over matter - Mind over matter.

AS always, I will keep you posted.

Good Night!

MRI Machine Broken - Thank the heavens above. Was not ready for it......Ug.
Rescheduled to Monday the 15th at 12:30!!

Just Do it

Like Nike, right?

Just do it......That's what I feel like sometimes with the Big S.

Even though it almost always feels like you have a low grade temp, you just do it.

Even though it almost always feels like you have a low grade, just under the surface flu with ever swollen glands - you just do it.

Even though you always feel tired, fatigued, lethargic - you pick up your boot straps and just do it.

Even though your hands hurt, will not get warm to save your life and your muscles are tired or sore - you just do it.

That's the deal with Auto-Immune disease. You just do it, because you have to.

Break on through to the other side.....Push it real good..... Just do it.

If you always feel a little sick, when do you give yourself permission to just be?

I had a friend that was sick the last few weeks, and we had plans a few times and she loved herself enough to put herself first and say NO to me.

It made me realize that I have the right to do that as well. Be selfish and put myself first, but if I am always busy "pushing through" what I feel like to live a normal productive life, when is it my turn to say no?

If you have read my entire blog, you already know that I have my Neapolitan theory. The three levels of my day. If I have plans in the evening, then I know I need to rest in the afternoon so I have the energy and stamina to go out. Vice Versa for morning, afternoon and evening. I can't seem to go-go-go all day long anymore.

But - I do go-go when I can. I "Just do it" a lot. Actually almost forgetting my Neapolitan theory or if not forgetting it, not accepting it and allowing myself to feel mad, envious or loss when I am not able to take part in the activities that may happen later.

For a while there I was helping a friend organize a house. We would leave in the morning and be gone about 5 hours, but during those 4.5 hours in the home, we were organizing. Well, when I would get home, I was beat. I mean whooped. I could not have gone out even if you'da given me a ticket to the Oscars. I was tired, achey, swollen and done.

But - I found myself - instead of being proud of a job well done, or having a feeling of accomplishment for whatever project we finished that day - I found myself envious that my friend, once home and showered, was back out with friends having fun (as she should). 

It made me so sad... and envious and made me grieve another loss I hadn't realized before. I almost felt pouty, like a three year old - "well, damn - If I know there was fun to be had later, I wouldn't of done the damn house". 

It is something I have/had to acknowledge and then accept. But man is acceptance a hard pill to swallow some time. I try to really put most everything into perspective now adays and then accept what is or what is to be. As hard as that is sometimes. 

With an Auto-Immune disease, your body never turns off. Your body is fighting the good fight all day long. Your little soldiers are always in action which is why we feel tired. Just as when someone without an Auto-immune disease starts to get a cold, and their little soldier bolt into action. 

It's the nature of the beast that I will be more tired than my friends and family. That I will always be pushing through what feels like a low grade flu every day so that I can work and play with them. 

And after work or play, my fuel is gone. My soldiers were working on the inside all day and I was working on the outside and together, whatever energy source I had that day is used up when I get home. It is what it is and I need to accept that without jealousy, anger or envy. 

When my friend was sick, I must admit - Part of me, the part that is still processing all that has happened, is still happening and what happenings are to come with this disease - That part of me went to a very ugly jealous place and had a fleeting thought..... Why can't you push through like I do every day. What luxury do you have that allows you to say, Can't - Sick, yet I push through the flu, aches, fatigue, malaise, swollen glands - all of it every day. 

I guess that luxury is self love and selfishness. Not in the derogatory sense of the word, but the true Webster meaning. To care about ones self first. Sometimes you need to be selfish. 

It's been an odd strange few weeks, and in doing a lot of reflection and acceptance of things -  I realized that it is okay to be selfish sometimes too with this disease. 

I guess in my head and heart, I have been trying to prove to myself to others since I got "sick" - I can do it. But at what expense? So, I am the one who sits at home swollen and achey, when I should be at a BBQ. I don't know the answer to that. I am learning as I go.

It's not in my nature to be selfish though. It is a foreign feeling for me. I have always been the giver. The can't so no girl. Sure I'll help or wow they sound sad - I better do something, make soup, send a card, drive over - make sure there okay. I'll take care of the homeless, bullied, anxious, sick, but I won't take care of myself?

I think I will always be that girl, but I think I need to tone it down a tad. No one really cares if I can "do it" or if and when I "push through it". People forget. You don't look sick, so no one thinks to check to see if your okay or understand if you can't make it. It's human nature I guess. Just as it is human nature to be envious sometimes... but I am learning to accept things as they are without envy. 

I am not going to be the life of the party all of the time anymore, I am not going to be in the popular crowd anymore. Being sick is NOT popular. It's not fun having to accommodate. I get it. And instead of getting mad at myself, or sad about it or envy what is - I am learning to accept things as they are. 

I will do what I can, when I can - and there are times when I will still "push through" and "just do it" - and I will do this without expecting a "Mighty Martyr" award or Gold Star. 

I will do it because I choose to, without regard to acknowledgement and with knowing that in doing so, I may be sacrificing some other stuff later that day. And its okay.

I still CAN - and that is a blessing. I have a great husband and a super kid at home, and if I come home and can;t get back up off the couch, then at least I am in good company - and IF there is something I need or WANT to do later that night, I can say no. I can follow my own Neapolitan theory and make sure whatever I schedule, it will not interfere with what I want to do later.

Pushing through and just doing it every day is exhausting. And for a few weeks I had a pitty party about it. I needed to go to a place of acceptance and mean it... and I think I have.

But as I always say, I am a work in progress and Scleroderma is a practice - Always changing and forever readjusting. And that's okay. Because this IS my life. And I am so happy to live it!!

Life is Good!!

Monday, November 1, 2010

ENT Visit

Hello and Happy Day after Halloween!

Just an update. It may be short and sweet, we will see.

The Halloween Fairy seems to have given me a bladder infection with all the bells and whistles (burning, fever and chills - Havent had one since my 20's) and My hands have been giving me a run for my money these past few weeks, so typing is a tad more difficult than usual. I have stay puff marshmallow fingers with Mickey Mouse I keep hitting the wrong letters. But, hey - that's what spell check is for, so onward.....

Well, went to the specialist ENT so I could get some information straight from the horses mouth with regard to my ear pain and vertigo.

My Rheum had eluded to an Auto-immune inner ear issue, which I of course would be prone to with Scleroderma, so to be sure I decided to bite the bullet and go to the ENT.

Let me start by saying it was on Friday, before Halloween so the staff was dressed up in costume garb. They were all lovely, the office was brand new and just gorgeous and I was quite content in my little room waiting for the doctor.

I was reading the Ear Poster on the wall trying to find the crystal thingy's everyone says dislodges and causes vertigo when the door opened and some young good looking kid in a red Cardinals jersey walked in. Well, I turn around, see him and think he walked into my room by mistake until he extended his hand and said "I'm Doctor *** - Nice to meet you"

Swear didn't even hear the guys name (fore-shadowing) because I was so shocked at; A: How young he looked in that red jersey and B: How cute this guy was ....

After I stuttered my name and managed to shake his hand, I brought myself back to reality to get the scoop on this Vertigo garbage I hope to never get again.

Previous to being brought into my little exam room, I had to take a hearing test. It was kind of neat. I have never done that before. I sat in this little glass booth with earphones on and had to click this Jeopardy style clicker every time I heard a beep.......

Well, Dr. Cutie broke the news that (aforementioned foreshadowing revealed) I evidently tanked the low frequency hearing test in my right ear. The same ear that causes me the pain, fullness and one I want to shove a pencil into.

Apparently the loss of low frequency hearing in my right ear is due to nerve damage/death. Good to know...... but as he went on to ear fullness, loss of hearing, nerve damage and episodes of vertigo painted a pretty clear familiar picture to him.

He said I almost text book described an ear disorder called Menierre's.

When I told him my witty little self created term "Verg-igo" - of always feeling on the "Verge" of vertigo for about 2-3 days after a vertigo episode, along with the subtle nausea and dizziness post episode and the episode itself lasting about an hour or two where I needed to hold on to walls and furniture to stand upright - He said Bingo!

My history and his findings pretty much suggested this Menierres thing, but the condition itself is one of exclusion - so before he can "officially" diagnose it, he must exclude other causes of the nerve damage, hearing loss and vertigo such as inner ear tumor, inner ear pathology amongst a few other things I have forgotten. He said the other concerns are pretty rare and he does not think he will find any pathology, but that protocol suggested that I need to get an MRI of my ear to rule out any pathology and balance testing.

When I asked if this Menierres is an Auto-immune inner ear disease as suggested by the rheumy, he said not in and of itself - however, auto-immune disease CAN cause it. The condition itself is of course incurable and the cause is unknown (Story of my life!) but there are medications that can prevent further future episodes of vertigo and hope halt further hearing loss.

I guess a low salt diet is prescribed (Oh No............) and a water pill is given, along with something else I can't remember (Sorry) to reduce fluid over load in the ear which they feel is the cause of the pressure on the nerve and cause of vertigo.

I asked about the crystals the doc mentioned last year and everyone talks about and he just shook his head saying that Benign Vertigo only lasts a few second to minutes and Never over 15 minutes - so any vertigo that lasts longer than 15 minutes and does not resolve with position change is considered conditional and a pathology should be sought - so, we are seeking.

I get the MRI done on the 3rd of November (so not looking forward to that -xanax here I come) and I get the balance testing done on the 12th.

As always I will keep you posted.

I must admit though, that after leaving the ENT office and the aura of cuteness wore off, I went through an array of emotions. I thought I had already went through all of my stages, but not that day because I was angry!

I was angry and needed to vent so I called my friend and told her the news.... and it's like old hat now. I mean, what else. It's almost embarrassing. I feel as if people just pacify me now - almost as if its "Now What" or "What this time" - eye roll....

I give this huge speech that I am angry, and the Big S has now allowed my body to gobble up my ear nerve and it was like old news because there is Always something. We went from my news, to oh and subject change.

I know my friend loves me, at least I hope? I think? Hell, I don't know - Nothing is safe with this stupid disease and I already lost one friend over it. My biggest fear is talking about everything I feel, lost, fear, and the things that are always changing. I don't know what is off limits. How much is too much.

I'm sure having a sick friend gets old. I'm sure having to hear about the latest Whoa gets old. I'm sure it can be annoying - but its not like every single second of every waking hour I talk about it.... but there are times when I need to talk, to vent and be angry that some invisible force is stealing the life from each of my organs. Eating me up on the inside. Gobbling my bladder, intestine, liver, nerve sheath and now my ear and hearing and I am mad about it! And scared about it sometimes.... and I want to know there is a place safe enough that no matter how many new things, symptoms, findings, diagnosis pop up - I can talk about it without fear. Fear of more loss. Of losing another friend. My credibility.

After I spoke with my friend, I must have gotten sad because I started to cry about yet another loss I have to absorb, so I called my sister - who reminded me that this continued laundry list of new diagnosis and new findings was the nature of THIS disease, and anyone who loves me knows that....

I felt a little better, but I know it gets old for others. I just hope that they in turn try to understand - If it gets old and annoying for you, think about how I feel!! Its happening to me. Ba Da Bum...Ching!

Who knows... Like I always try to say - There is a lesson in everything and I am finding Karma in a lot of things too. I had a neighbor who had Chronic Fatigue Syndrome. Stay at home mom and every week she had a new infection and was always calling with "something" and I must admit - I'm sure I rolled my eyes a few times. I'm sure I pacified her a few times and probably even "missed" her call every once in a while. Karma. It'll find ya!

I really try hard now to try see things from every perspective and I am working on letting things go and accepting things without expectations. I have always considered myself a compassionate person and always felt I empathized with others.... but my perspectives were probably more one sided. Mine...

Now instead of rushing to judgement, I try to understand the other side and accept/absorb things without getting hurt. What a lesson and learning curve.

I have always tried to see the why behind the what.... I mean people don't start out saying, Boy I want to be a homeless addict when I grow up or Wow, you know what I think I want for my life plan? Teenage pregnancy.

There is a reason behind what people do, what they become. The Why behind the What. But I am trying to take that philosophy a step further. A step more intimate and close to home.

Anyway - Back to my damn dead ear. Well, the hearing I have lost is gone for good. Bye Bye Birdy. I could have continued progressive hearing loss or it could stay unchanged. That remains to be seen, and if it is Menierres - the meds will help. The good news is, that the degree of hearing loss will never cause a complete deafness. There will be options of hearing aids or cochlear implants if things progress that far. So that is promising!

With regard to if I knew I had lost hearing? Good Question. Well, I know my hubby has been making fun of me for the past couple years with how loud I watch the TV. Always asking if I was sharing our HBO with the neighbors. He also teased me about talking really loud on the cell phone.

So who knows......I guess maybe I have but it just didn't register?

Maybe nagging and whining will turn into low frequency, then I won't have to hear them anymore...

Anyway - not to be be anti-climactic  - but my hands are killing me, so I better sign off for now.

Be Well!!

Love ~


CT Scan Results!

I think I had mentioned in one of my post about the need to get my 6 month surveillance CT scan of abdomen, pelvis and chest.

Well, I did it and the results are in. Drum roll please...........................

CT Chest:
I don't have the official results from the chest yet, but my lung nodule was visualized on my abdominal CT and showed the nodule size, shape and context have not changed - so that's good news!

CT Abdomen/Pelvis:
Bladder: There is still bladder wall thickening (Scleroderma can cause "Thickening" or scar tissue anywhere)
Liver: The liver is still enlarged, which MD feels is "autoimmune" related (Sclero can cause PBC of liver)
Spleen: The spleen is normal size - Wahoo!!!
and something new......

The sigmoid colon demonstrates scattered diverticula; Impression:
Sigmoid Diverticulosis

So it seems that perhaps the Big S has made it's way "officially" into my sigmoid colon. I know the MD had thought perhaps that was happening, but to see it in ink on an official report is kind of a bummer!

Guess what that means... You guessed it!

The dreaded Colonoscopy I have been talking about putting off - I think that bad boy may come to fruition sooner than I had anticipated. Merry Christmas!

This does kind of clear up the mystery behind my Koo Koo Clock episodes. I think the cramping with bowel movement and vomiting may in fact be due to the diverticuli? Who knew.... I didn't but I guess I do now.

I mean - I don't know "Officially" yet, as I have not been to the GI or had the Colo, but I saw the impression on the CT report, which of course got my interest peaking so I researched it (googled Scleroderma and Diverticulosis) and found there IS a correlation of Diverticulosis and the Big S.

Apparently "Large Mouth Diverticuli" are associated with Scleroderma in the Sigmoid Colon.

Hmmmm - So if it walks like a duck?

We will see - Guess I am in the Market for a GI doctor on this end of town.

As always - I will keep you posted.

Love to all ~