Only you all understand how hard it is to live with this

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 2/27/2009 6:39 PM (GMT -7)   
I have this overwhelming desire to keep up with my peers in the photography industry.  I see and hear about all the work they're doing, all the new technology they're researching, how their businesses are growing and expanding.  I on the other hand see my business going in the opposite direction.  I'm struggling to make ends meet, and I'm embarrassed to admit to anyone that my business is a wash-up.  I would have a thriving, growing, exciting business if I could do the amount of work the others can do.  I've put everything I have into this lovely little business.  I offer excellent service and really nice photography. But I can't take enough work to keep it going, or keep my bills paid; let alone upgrade my equipment that is literally on its last legs.  Oh you guys I want to fit in so badly.  I want to do what they're doing.  I want to have their energy, drive, enthusiasm, and success. I see photographers who came on the scene 4 years ago, flying past me. Literally leaving me in the dust, and I've been doing this for a decade now. I'm spinning my wheels.  Going nowhere.
My motivation is dismal right now. I'm just so tired and worn out.  Feeling pressure to continue because if I don't we lose the house, cars, etc.  I want to continue. I just don't have the "umph" to keep going at this pace (and this pace isn't very fast).  Lupus and Fibro has taken enough from me already. Now it wants my career, my passion.
I needed to get my feelings out. As much as my family and husband support me, they don't understand what this does to my confidence and my self esteem.  Thanks for letting me vent and cry.
 
Love
Ginny
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


MarieP
Regular Member


Date Joined Mar 2007
Total Posts : 22
   Posted 2/27/2009 9:43 PM (GMT -7)   
Hi Ginny

I haven't posted here in quite awhile - although I still lurk and read. (I am still in the limbo stage - but have finally had a positive ANA - which is enough for the doctor to finally give me a referral to a rheumatologist! I go on April 6).

Anyway - I know how you are feeling. I have had times where I feel like I must just be lazy or something to not be able to do what others are doing. And, it is so hard to watch others move past you when you are working as hard as you can.

I just have a couple of questions though for you - not saying I can solve your problems, but maybe I can offer some help.

Do you have a website for your business? And, do you use the internet to get customers and to build relationships etc. - and show them what you offer?

Because of my health, I have made myself learn a lot about Internet Marketing as a way to work from home. If you don't have a website, but would be interested, let me know. I can help you get a nice site up showing off your work - and you can use it to help you market your business. I can do it for you for free - because I know how you are feeling and want to help. Maybe you could use a blog showcasing past work - and get your clients to leave testimonials etc. Use it to spread the word about your business.

Even if you aren't feeling good - maybe it can help you a bit by doing some of the legwork of the marketing for clients when you can't go out yourself.

There are a ton of things you could do - depending on where you live and if you would like to try something, let me know. I can maybe share some ideas to help you get some clients through the internet and save yourself from having to rely on feeling good enough to go out and look for them.

Anyway - just a thought. Let me know if there is anything I can do for you to help.

Marie

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/27/2009 11:07 PM (GMT -7)   
Ginny,

I know where you are at. I am still suffering because of the loss of my vocation and my passion due to this disease -- and it's been a quite a while since I had to stop. Now I feel eternally exhausted and worthless...with no end in sight.

It's not a fun place to be, and you are right, nobody quite gets it like the people here who are sharing our versions of the same story. I wish I had some special secret pill or magic to share with everyone here...

I try to just do one thing at a time (not that that helps all that much!)

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 2/28/2009 6:05 AM (GMT -7)   

Hey Ginny! You have just described my biggest fear! I do like Marie's idea! Do you have a website? My brother started a buisness and when he finally got around to having a website, it started getting so much buisness.  He homemade buisness cards with the website address and started handing them out, leaving them at different places, he even put one in those things at restuarants saying put your buisness card in and if we pull it out we will give you lunch for the office....well, his card got pulled! I know this doesnt help very much but I wanted to remind you...You are strong! There is no question about that.

Hugs

Amy


21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C

Sometimes we feel our flame of life flickering and growing dim then someone acknowledges who we are and what we can be and rekindles our life with hope and love


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/28/2009 8:35 AM (GMT -7)   
Hi Ginny:

I'm sorry you're having to face this. You're right only those of us here can truly understand how you feel. I'm an accountant and it was hard to give up my job. I felt like such a failure all that time in school and now I'm not using my degree and ability to help our household income. It took a long time to accept how things needed to be.

I think Marie has a great idea for you and maybe it will help. I can't imagine being in a situation like you are were if you don't continue you'll loose your home and car (((hugs))). I know that you've been struggling for awhile now with your Fibro and I'm truly sorry for that.

I don't have a solution to your problem, but I wanted to let you know you're a wonderful, hard working young woman. I'm proud of you and I wish you the best.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/28/2009 9:19 AM (GMT -7)   
HI everyone, thank you for your words of wisdom and complete understanding. The feeling of being left behind is almost an abandoned feeling isn't it?  My life runs in slow motion, while everyone else around me is in warp speed! 
 
I am an established photographer in Calgary. I have a great website and blog. Here's the link, there's even a picture of me. A face to the name!  www.hotshoephotography.com  Tell me what you think!  I've had the website for about 8 months now. My previous site was nice, but not like this.  I get lots of inquiries for weddings, portraits, etc, but I can't take every client that contacts me.  If I did, I'd be in the hospital! LOL.  Other photographers can take 8-10 weddings per month plus various family/baby/maternity shoots.  I can manage only 2 weddings a month and maybe 1 or 2 other portrait shoots. 
 
I guess what I have to get solid in my mind is that it isn't the number of clients I get that makes me successful. Rather that it's the clients I do have that makes me successful because they're thrilled with their photos, and I've given them very personal service.  I know that's how I need to see this, but I go right back into the "keeping up with the Jones'" thing.  The Jones' being my photography buddies (who are all amazing people by the way).
 
Your words of encouragement mean so much to me. Love you all!
 
Ginny
 
 
  
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


MarieP
Regular Member


Date Joined Mar 2007
Total Posts : 22
   Posted 2/28/2009 10:15 AM (GMT -7)   
Ginny - that is a great looking website. It definitely showcases what you can do - so hang in there. I know it is hard, but you have talent that many people would kill to have! Just keep doing what you can, and don't worry about the others.

"Success is not so much what we have as it is what we are."
Jim Rohn

Marie

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/28/2009 10:44 AM (GMT -7)   
Thank you Marie!  The quote you included is bang on. I will keep plugging along, doing my best and making my clients (however few they may be), very happy.
 
Have a good weekend Marie,
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 2/28/2009 12:10 PM (GMT -7)   
Ginny,

I am sorry to hear that you are feeling much like I at moment in life! I worked hard to finally finish my degree, while others in my company were being laid off I was receiving awards and praised for my good work, so I knew my hardwork and determination was paying off (or was it?) and then my lupus decided to rear its ugly head and knock me out of the game!

Now I sit here day after day wondering if it was the stress and long hours I put on myself that has put me in this position or was it just the luck of the draw with this crazy disease. Either way, while at the time I am still legally employed that is not going to last much longer, my FMLA that protects my job will run out this month and I am by no means in any condition to return to work. I am scared because I have applied for SSD, but have not heard a word from them. I need the benefits from my job, i.e. pay and insurance to continue on a day to day basis. But what is worse than all of that I feel as though I as a person have lost my identity! I try hard everyday to tell myself these are the cards God has dealt you and if he wouldn't give you more than you can handle. Somedays it is hard not to fall into a deep dark hole of depression!

I totally understand were you are at, you are not alone! While I too have a wonderful family, the most supportive husband who literally takes care of everything in the house and still ask me "how are you feeling? Is there anything I can do for you?" My son how lives at home is so kind and prays for me everyday, always asks the same. My daughter, at 21 lives on her own, in her own way does what she can to try and make life easier. But I cannot share these fears of mine with them, I'm not sure why, maybe I don't want to be more of a burden, perhaps I don't want them to know that I am feeling more inferer than what they know. I know that you folks here can relate and that is a huge relief.

I wish I had some words of advice for you! I'm sure it must be even harder owning your own business and trying to keep going day to day feeling like we do. Do you have anyone who works for you? An apprentise of sorts? If not perhaps you could hire one, that you could oversee and send on jobs and that way if you are not feeling upto it your business could still thrive and it's a win win for both of you!

I'm headed to check out your awesome website now! Hang in there sister! I know if I can put one foot in front of the other each day, you can too!

((((HUGS))))

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/28/2009 1:57 PM (GMT -7)   
((((( Ginny ))))) Great website, you are a great photographer! It's also nice to put a face with a name, you are a very pretty young lady!

At this point in the big game of life living with lupus you just can't put this kind of stress on yourself. You are right, it's not the number of photo shoots you get a month, it's the service you offer each client you photograph. You are good at what you do, so what if you can't do 20+ a month you are still great at what you do!!!!!

I am like Melissa, at one point I had a pretty good job, I could have really gone far in the company but the stress of the job and people was killing me. I had never been a sickly person and literally overnight that all changed. No one within the company was supportive AT ALL, I stayed as long as I could and when I found an opportunity to get out, I did. It was a couple of years before I found a great job. I work with great people that are very understanding which I am not use to. I will work there as long as my health allows me to.

Sis, don't worry about what the future holds, just take one day at a time. Do what you can and don't worry about what other people think of you or your business.

Love ya sis!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/2/2009 10:52 AM (GMT -7)   

Ginny,

Thank you so much for sharing your website.  You are truly a very talented photographer, and I personally hope that you do not give that up--ever.  Don't lose sight of the fact, also, that there is always hope that things will get better.  My mother struggled with lupus for my entire life.  She had periods like what you are describing, but she also had periods of remission where she felt quite normal and was able to take on a normal work load.  Even when she was ill, though, she always continued to work to the extent that she could.  She claimed that working is what kept her alive for so long.  So keep doing what you can.  I'm sure there is a remission for you somewhere in the future.

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 3/3/2009 5:25 AM (GMT -7)   
Hey Ginny, great web site and beautiful photography.

I feel ya, I was working a great job, supporting myself and while I was always had a "hue" of being sick, I was still strong enough to put in a 45hr week and then some.

Then my symptoms got worse and though I still tried to work, I just had to stop. I went on work disability, then 3 months into that, I went back to work because staying home while everyone was "Living" broke my self worth and esteem.
I was able to work 4 1/2 more months, then had to stop again. I've been off work for 9 months now. I've been getting better, but not well enough to work full time. But since I was refused for long term disability, I'm returning to work today actually.
I'm terrified, but I have no choice.

I feel your fear, Stay focused on getting well, I wish I had some great words of wisdom for you, but I've yet to discover the path to making my sefl esteem solid.
My beautiful inspiration
 
The world breaks every one and afterward many are strong in the broken places


 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/3/2009 9:28 AM (GMT -7)   
Ginny,

I loved looking at your website. It made you much more of a person to me than someone on a website! You are beautiful -- love your red hair, and your photography is terrific. I just gave my daughter, who's 21 and majoring in photography, the money to set up a very similar website. I hope she runs with it like you did.

I do understand how you feel. 10 years ago I was a successful professional investing millions of dollars for individuals and corporations. Today I've lost my looks, my energy, and the person I used to be - on the outside. What I haven't lost is my ability to accept whatever life brings me. I believe that God gives us that power. While I may not be as cute or successfull professionally, I'm the same person on the inside. I refuse to let today be ruined because of my illness. And I refuse to give up the hope that one day I'll go into remission. I'm almost there.

I love what Marie's quote. And El is right - don't ever give up hope for a remission.

I believe that what has gotten me through this is a very good therapist. I hope you have someone to talk to. I'm sure it's been easy to lose sight of the fact that you are beautiful and talented, no matter how much energy you have. But I also believe that it must be harder to be going through this at your age than at mine. Please hang in there Ginny. God has a purpose for you, and I believe that our illness is no accident.

Thanks for sharing so much of your life with us. I've forwarded you website to my daughter. She'll love it.

Love,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/3/2009 5:18 PM (GMT -7)   
Melissa, Stacie, El, Peacesoul, and Pat, I really appreciate how you were very open with me about your own personal struggles with maintaining your identity through job loss.  I've always been a very confident person with self esteem, but I've lost a lot of that over these past 10 years.  I find myself being very needy for acceptance.  If I don't feel like I fit in, or if I feel "left out", I take it hard. I need to feel like I'm an equal among my peers and friends.  Not sure where those feelings stem from.
 
I made some great connections this week with wedding planners in my city. I'm getting my name out there, face to face with these industry people. No mail-outs.  All personal, one on one meetings.  I think I made some great progress today. I see another one tomorrow.
 
I'm not giving up on a remission either.  I was in one from 2003 to about 2006. I know I can get back there. Someday!
 
Pat, I'm glad you are so supportive with your daughter's photography goals. Makes me smile!!
 
Blessigns everyone,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/3/2009 6:21 PM (GMT -7)   
Hi Ginny--
I used to work for a photographer when I was young, taking green card pictures, portraits, whatever. I have some stories! My poor boss lost these people's wedding and they weren't happy. He was very old.

As someone who has made compromises only to make more compromises, I can feel your pain and hope you keep fighting and find a way to do what you love, even if it ends up that maybe you do different things.

I used to be a musician, went to college for it, but so many throat surgeries make it very bad for me to play. I went into writing alot, but my brain just doesn't catch things like it should. I have figured out one thing as an artist, if you do your art for yourself and maybe your kids, you can find great joy, great inspiration. I recently invested in music, but my throat swelled up for weeks after trying to play once. I'm getting to the point I just don't careabout that and will play anyway.

I know I kinda worked until I just couldn't anymore. I did lose everything. I can't recommend that to anyone, but I'm glad I did what I did when I did because things only would have gotten worse. I know you will get a second wind and get going. Maybe there are some other life changes that can give you more energy and a chance to concentrate on your art and business.

Much love to you and wishing you superwoman strength.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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