RANT

[jordozmom]

Ok Guys - I have just got to rant for a moment to people who know what the heck I am talking about.

I have had this !@#$% disease for nearly 20 years, and honestly, up until recently I have done a pretty good job of not getting too upset and keeping a level head about it.  But right now I am flaring, I have a sinus infection, and I am apparently in Perimenopause and I have just HAD IT!  GAH!

I am sick to death of doctors, pharmacies, these stupid sinus infections, weight gain from the damned antidepressants I take because of this disease, the side effects, the restrictions, the heartburn from all of the meds I take, allergic reactions, the fatigue, the joint pain, I am tired of taking 25 pills a day plus eye drops plus nose rinses etc. etc., and I swear to Adele if I get one more new disease to add to the list I might just lose my schlitz. I was just diagnosed with RLS the other day.  Are you kidding me?!  ENOUGH ALREADY!!!!!

AND I am sick and tired of being in bed all of the time.  I am tired of these four walls and that stupid TV.  And I go on Facebook and I see all of my friends and family doing things - some are doing amazing things like going on cruises or working out daily (which I used to do) and losing 50 lbs - and it just kills me that I can't be out doing them, too!  Then I try to get up and do stuff and before you know it I am huffing and puffing (diagnosed with COPD last year - YIPPEE) and my legs are shaking and all of my energy just drains out of me and I am scrambling for a chair or my bed before I end up on the floor.

Oh, and speaking of friends - my friends are driving me crazy because I never do anything with them anymore.  Or, God forbid, I finally feel a littler better and do something with one of them, then the others start calling or complaining that I haven't done anything with them, or they post passive aggressive crap on FB about friendship.  And don't get me started on my husband - even though he is retired and we spend EVERY SINGLE MINUTE OF EVERY DAY TOGETHER - if I feel better and want to do something with a friend he is jealous that I am not doing something with him.

GAAAAAAAHHHHHHHHHHHHHH!!!!!!

I am so sorry, but I just HAD to get that out.  Oh, and meanwhile my husband has been running every day training for some road races and at 17 years older than me looks better and is in the best shape of his life.  I literally just want to run down the street screaming.

Please just tell me that I am not the only one who feels this way.  Please tell me that I am not being too sensitive or too emotion or crazy.  Please tell me that I am not the only one who feels so frustrated and sick of it that I could just SCREAM!!!!!

[irish]

I think you just had a very healthy rant about the crap in your life that is bugging you. Amen. You are not the only one. You said it so well. Sort of gets old doesn't it.  We all try so hard not to be whimps and to manage to the best of our ability. It gets old doing this when we really feel like screaming and ranting and raving.

Wouldn't it be great if we all lived in the same area and we could do some type of several day activity together that would involve travel. If we had a bad spell during the trips we wouldn't have to apologize or try to cover it up. We could just be miserable and take a time out. A lot of the normal trips are just not in the cards for us--or the running and exercising or doing anything that is pretty much normal not to mention anything that is wild and crazy./ Good rant and I sure appreciated it. Hugs to you and hang in there cause you are amongst friends. Irish

[Joe S.]

I hope your rant helps. Very typical of what we all go through. My wife is driving on our trip. We have scheduled down time and un scheduled down time. She is carrying the load this trip. After my recent set of stents she understands that I can not do what I did. I often sleep while she drives. We have been doing 6 hour drive days instead of 12 hour days. Our cruse is a two hour ferry ride and a 2 hour steam boat trip for brunch. I do not think I could tollerate more.

Some of her family is finding all my food allergies strange. Some do not understand why spicy food is out.

Jan has made friends with my friends. A lot of our friends have health issues like fibromyalgia. So typically when I have a bad day they have a bad day. We plan activities like pot lucks, videos, and visiting.

Good luck with managing the challenges you face. Have the best life you can with this disease.

[warmwaters]

Yell if you need to. We know what you're talking about.

My partner and daughter went off to a concert last night which he described as "possibly the best concert I've ever been to."  I went to bed at 6:30.

It really hard being sick all the time.  The other day a friend called me a "loner", which is doesn't feel true at all. I'm alone a lot, but it's not by choice.  Before I was sick, I knew people, did things.  But when I'm not sure if I can drive, whether I'll have enough energy to go, and have a hard time doing things in the evening, it gets tough to be social.

Hugs!

[cccourt1942]

Jordo:  I loved Joe's message to you.  He has more (or better) friends than I do.  But...I do have a few who understand, don't question...or at times I believe they just go along so as not to get me started.     I recently took a BUSY week long trip with a friend who knew what she signed up for.  As soon as we had landed and had our bags, I felt a pang in my low sternum....unmistakable costochondritis.  I had seen my neuro for a bi yearly visit two days before my departure.  I showed him all the emergency meds I had to take along with my prednisone burst Rx he had given me last December.  We discussed what to do "if"...which actually...I told him.  He agreed but gave me direction on "cashing in" my pred burst Rx....and I was quite comfortable taking off. 

FIRST night...by 11:00pm I knew I had to get to an ER for the pain.  It hadn't gotten full blown, but I knew what the week held for us.  By 12:30a.m. I am getting dressed to go to ER...and my friend woke up...had a cow when I said I'd be back in a bit.  Looking back it's funny.  BUT..the fact she rolled with it is my point.  We went down, caught a taxi, and the best part was in NYC the ERs know what costochondritis is.  Not like here in Dallas.  They still have to do all the heart stuff due to my age and the pain causes high blood pressure.  Anyway, in and out in less than an hour.  Slept late the next day....cashed that Pred Rx in...yea I had it...and went off on our day.  Two days later it was still a dull pain, managed by Tylenol, but nothing that stopped me in my tracks.  Once again, supportive friend would check periodically to see how I was holding up.  Meant the world to me. 

Those friends of yours:  I would venture a guess you could find one or more who would listen and understand so that you would have someone with whom you could do things...yet be prepared for an "event."  You sound young...and still have desires and ideas for life.  I am fearful of doing too much by myself as my disease has progressed.  I have to drive to Houston three times in the next two weeks.  Fortunately two of my friends who understand are at the other end to receive me on my to do list while there. 

I will say this: I am most miserable when I do not reach out believing I am being a burden to friends and/or family.  I know the people who do not wish to hear from me or ask about how I'm doing.  I stay at arm's length from them as it hurts me.  This way I don't have to see their expressions or hear their comments as to a chronic illness.  As they all say: You look fine.  Argh.

Hope your rant has helped.....actually: It has helped US....we have felt your rant vicariously! 
Sjoldier c3

[jordozmom]

You Guys are STARS!

Thank you so much for your replies - they made me feel so much better.  At least I know it is not just me and I am not alone.

M.

[Carolina]

OMG,Jordozmom,

I could have said every single word of what you posted, and HAVE many times.

I want so badly for my 77 year old husband to find another part time teaching position and GET OUT OF MY HOUSE and stop appearing for lunch!

And he's only 3 years older than I, but is totally healthy and in great shape.

Anyway, I wanted to shout out an AMEN, sister.

Hugs,  Elaine

[Carebear]

Hi jordozmom,

I can tell you that you sure are not alone.  Not by a long shot.  I found your post so well written, so similar to my own experience, that I just had to read it to my spouse this morning.  There even appeared to be some understanding and empathy from the other side of the breakfast table.  Thank you for that, jordozmom!

I second Elaine's AMEN, sister!

[lorigacc]

Hang in there Jordozmom, we have all been there, and some of us currently feeling the same way.  Take one day at a time and know that you are among friends who understand.

[quietdynamics]

Life is a series of peaks and valleys. We have our dreams and sometimes twists happens.

I was bedridden for almost 4 years.. just crashing. Unbelievable.
Not at all like the old me.
I was sitting next to DH and I asked " Do you miss me?" Without a second of hesitation he answered "Yes"
So once a month at least we need a date.

I actually questioned if the Drs. had gotten something wrong, missing something... on and on.
So I got a second opinion after being with the same Dr. for a number of years.. I am doing measurable better.
https://sjogrensworld.org/index.php?topic=26653.0

Drs. have noted other issues and not labled me with them (yet).. mentally I let out a breathe.. enough labels.
Silly to an outsider that someone would be 'thrilled' to lower a med dose.. one less pill in the handful.. lol.
Pharmacy.. I try to time it so DH picks them up at one stop. I even try to make Dr. appts in the same month.. sometimes it does not work.

Rants are good, healthy.
Sometimes I wish I could cry a river.. just can't make enough tears. Just to let it out. Actually read a study about the emotional/psychological impact of Sjogrens patients not being able to cry.

Keep your chin up .. I tell DH to go play golf. LOL


I am now week 5 in a leg brace... so I picked up a wheelchair from Goodwill Medical Supply for $110... Just not going to sit in one place.
Perhaps a wheelchair would help you get out?  Sometimes we need to come up with adaptions to better our lives at home.

I posted some info on 26 Sjogrens Pulmonary Clinics.. so I include the link here if you ever need it.

[Jasper]

Feel free to rant any time you need to. We understand and empathize.

I don't think anyone who does not have an Autoimmune Disease can understand what these diseases do to us and how they affect us. We would love to be out doing all of the things they are doing. We just cannot do it, at least, not in the same way they do it.

I noticed that you have RA along with Sjogren's. I know you are on Methotrexate, but I am wondering if your Rheumatologist has considered trying any more of the various immune suppressants or biologics which might be more effective for Sjogren's while still treating your RA.

I know that the use of these drugs for Sjogren's is not yet widely practiced, and they are all off label, but some of them have had good effects for people with Sjogren's.

I tried Imuran, which caused bad side effects and elevated my liver enzymes. I also tried Cellcept, which eliminated the joint pain, but it made me very sick (GI) and extremely fatigued and I could not stay on it.  Them my Rheumatologist ordered Rituxan infusions and they have been a miracle for me. I feel better than I have felt for years and years. Rituxan has been very effective in lifting the fatigue and giving me energy. I can plan and do things now, which I could not do before Rituxan. Rituxan has also vastly improved my peripheral neuropathy symptoms, improved my cognitive function, decreased my joint pain, improved my urinary symptoms, prevented flares, and possibly improved my saliva flow. Like I said, it has been a miracle drug for me. There are some others that are also being tried, like Benlysta.

You have RA so there should be no problem getting these drugs approved. It may be worthwhile trying some of these drugs that may help with Sjogren's as well as RA.

I hope things improve for you.

[Lindabridge]

Being in a peri menopausal stage is in itself very stressful, causing havoc with your emotions. Pile a few autoimmune diseases on top of that, and you have every right to rant.

I'm beyond menopause, but I well remember how it caused me to feel very unstable.

This is a very safe place to rant.

[Carolina]

Dear Jordozmom:

The value of the rant:

1.  You get it out, uncensored.  It is freeing to really get it out of your mind and in print.

2.  We read it, we care, we understand, we do not judge, we identify, we find things in our own minds that need to be gotten out, as well.

3.  Misery does indeed love and NEED company.   

4.  Sharing lightens your mind and heart.  Being understood and accepted works miracles.

Hugs,  Elaine

[SjoGirl]

Oh been there, been there been there. This is a safe place to rant with people who do understand.

I have concluded that it's simply impossible for healthy people to understand how one person could have so many issues, be sensitive to what you need to do to manage diseases, and be friends no matter what. People have little patience and TV, social media, and the pace of the world teach people we should all get over it in a two hour movie where all is well at the end.

Chronic illness doesn't work that way and people move on. I've seen the same after people lose a spouse. A good friend who I had not talked with for years reacted oddly (for me) when I said have a good weekend after a phone call. She later said I needed to understand that since her spouse had passed her old friends, still in couples, had moved on and weekends tended to be quite lonely. How very sad that the world is this way.

Hang in there and try to look at what is good if at all possible. That's the way I've kept from becoming too depressed on the dark days.

[Deb 27]

jordozmom,    I think we all can relate here to your feelings. I know I sure can. It's like we grieve for our former, healthy lives.  It's hard enough to age, but when you have an auto immune disease, it gets really tough at times.  I know this is true for me to see my friends just stay on the go and  I am on the couch. I am afraid to commit to anything more than a dinner with people.   I could go on about things but I am too tired. LOL..... Take care, I hope you feel better now!!!!