Many people who are diagnosed with lupus are still working. Many others are not able to work anymore and have had to apply for disability. This can be both a blessing and a curse. The biggest question many ask is “When do I quit working?” and “Can I get disability if I have to quit working?”
Each lupus patient must make these decisions on their own. Alot depends on whether they are having major issues. For instance, I went on chemo and explained to my employer that it made me sick and weak. I was informed that they were going to work with me. Upon my taking a paid leave of absence because of the weakness and sickness that chemo brings, I was informed, via email no less, that I was terminated. I admit I was bitter and disillusioned but after working for 15 years with lupus, I finally had to realize that this was my wake up call that maybe I needed to retire and take care of me.
To be sure, this decision was not made lightly. My husband was on disability already for some major issues and I was the breadwinner of the family, and I carried insurance as well. To lose my job meant that unless I cobra’d the insurance, we lost our health insurance that we both so desperately needed. Now, I ask you, if you have ever had to cobra your insurance, how expensive was it? Sad to say, ours was too expensive so no insurance.
This road we traveled carried many twists and turns but in the end, I received my disability and got insured again. The road was rough… not an easy one. We lost our house, our cars and all of our savings while waiting to get the disability pay. I had to resort to the United Way for help getting my rx’s. Unless you have ever had to do this, you will not understand just how low you feel and humiliated. I ended up not taking a lot of my meds and actually got worse because of it.
I am not writing this to scare anyone. I am doing it to share so that others can survive the transition without all the drama we went through.
I was my own advocate in this process. No, I am not an attorney, but I did all the leg work myself and compiled it and gave it to SSA. My claim was denied three times and I had to appeal each time. Finally, I went before a judge and he granted my claim. I now consider myself “retired”. I did all of this by myself. In my previous emplyment I had worked for attorneys so I figured I could handle it myself and I did.
This is no easy thing to go through let me tell you. Your self esteem takes a beating from not working. I loved working, and the challenges of it all. I found myself at loose ends, not knowing what to do. However, I have now settled into a fairly decent routine for my days (the ones where I feel good). I do not have guilt for missing work because of my disease. (no job:not worrying about job).
I found out a lot about myself in this process too. I found that I am an intelligent woman. For example, while I was waiting out the process of disability, and on high doses of prednisone, I decided to “pretend” I wanted a little scrapbook store. So, I drafted a business plan, looked up merchandise and wholesale, called the wholesalers for catalogs with pricing, checked out storefronts, etc. You see, it kept my mind busy while my body was not doing so good. I kept my mind focused on something other than my disease. It really did help me get through the rough times.
Disability is no easy road even when you get it. For example, my husband and I receive an amount per month that almost equals what we used to bring home weekly. Our budget shrank, our bills piled up, and we both lost hope of ever seeing the other side. Slowly, we have crawled out from under it all to discover we have many things we can enjoy that do not cost a lot of money and energy.
Now we have insurance again so we can see our doctors without the fear of paying for it. Our prescriptions are covered now and it is another blessing. We have learned to slow down, enjoy life, and enjoy the somple things now. We both were so busy in trying to work and save and do all the things you are supposed to do, that we forgot how to relax. We camp, fish, go to races, play with the grands, garage sales, etc and enjoy doing things we had pushed to the back burner while we were working.
Life has changed for us in so many ways now. We have a smaller home now than the one we had before and we drive a car that we bought with cash. It is a 1994, but it is paid for and if it need repairs, it is still cheaper than the new ones we had. We downsized our possessions and literally threw out a lot of junk we had been carrying around for years.
We moved back to Ohio to help my mother-in-law with her house and did so willing. We get to spend more time with our grandchildren and extended family and friends. While we may not have a nest egg anymore, we are surviving and feel blessed. You see, when we stripped away all the material things we had been striving for, we saw that we were not enjoying them as much as the smaller, simpler things we have now.
As those who read this blog know, many days are not easy for me and as much as I wish I could go back to work I now accept that it will not happen unless I get into remission. This whole experience is like the serenity prayer written by Reinhold Niebuhr. It says the following:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
It says it all. In conclusion, disability is a blessing in that when you get sick and cannot work anymore it is a safety net. The process is different for each person. How you deal with it will either make you angry or stronger (I prefer stronger). Instead of moaning about what we lost, we choose to look at what we have and find blessings in each and every day in many ways, big or small. Most importantly, we have our focus on God, who gives us life and knows what we really need to live…1 Timothy 6:7-10 says this:
7 For we have brought nothing into the world, and neither can we carry anything out. 8 So, having sustenance and covering, we shall be content with these things.
9 However, those who are determined to be rich fall into temptation and a snare and many senseless and hurtful desires, which plunge men into destruction and ruin. 10 For the love of money is a root of all sorts of injurious things, and by reaching out for this love some have been led astray from the faith and have stabbed themselves all over with many pains