@ a crossroads looking for some blessings

Alright fellow neb noses, this is a LONG one! And it is me opening up and swallowing my pride.

Most of you know that I have been going through some crazy health issues. I woke up one morning and my right foot was numb, it then progressed to my leg with tingling, zinging, and throbbing. From there, pretty much to my entire right side. I was walking with a cane, and the Pittsburgh Hospitals ran every test they could think of, and they were unable to figure out what was going on. SO I went to Cleveland Clinic, they originally though it was POTS which it was not, where they found that I have Right Side Neuropathy just like I was told here in PGH, but I also was told I have MGUS/ Light Chain Disease (just my body hates me). Neuropathy is pretty self-explanatory. Most people that have this MGUS are found to have abnormal proteins in their blood and could turn into a list of things I DON’T even want to talk about. Which is a vague description; However, the best part is what my body goes through daily and that is the SYMPOTOMS they are as follows:

Symptoms of monoclonal gammopathies vary among conditions but can include (I am just listing what I have and experience daily): Lack of energy or tiredness, weakness, balance issues, Pain in the bones or soft tissues, Neuropathy, Tingling or numbness in extremities, Nerve Pain, can experience Infection that keeps coming back, Increased bruising, Weight loss/ gain, Headache, Vision problems, Speech Problems, Swelling, and Mental changes.

Yes, Cleveland Clinic has released me back to Dr’s here in PGH, neurology, pain, regular PCP of course, and I will be seeing a Hematologist oncologist on Friday to get established with him and for him to do all my blood monitoring. YES, this is the reason I have been semi-MIA the last year. YES, the DR’s will continue to treat my symptoms with different medications; YES, I eat a healthy diet, YES I try to get good sleep when I am not dealing with pain. I TRY to exercise when my tingling and zinging isn’t so bad, by walking the dogs. I take extra vitamins too.  Yes, there are days that I feel good, and at least try to be my normal self. NO, this does not mean I am better, NO this does not mean I was FAKING it.

THE THING THAT HAS BEEN THE HARDEST IS I have not worked in OVER a year, you can only imagine! Going from a 2 to sometimes 3, (because you all know I had more than one job at times for extra cash) income household has been the hardest. I have used all my savings, so even if I were to Miraculously wake up tomorrow fixed I would have nothing to retire on.  Bills are still due. The bill companies aren’t going to stop calling. And remember we have one in college too.

I applied for disability and have been denied multiple times. ACCORDING to SSA Disability I am just depressed. FUCK YEAH, I AM DEPRESSED DISABILITY!! MY BODY DOESN’T LIKE ME! So now I am working with a lawyer, but he stated it could still be months till I get a hearing. I have applied for some part-time work but when I have applied to jobs, I explain my situation and don’t get a call for an interview. OR during the interview they say, “they can’t take a chance on me calling off” or ask if they think I would be able to work a full shift. In all honesty NO. So what does one do to help contribute to household bills?  

Thankfully I do have my cousin who needs help with his business, so I do some work when able to. AND YES, Chrissy has talked me into DJing on Tuesday nights at the Apple Inn, but I literally prepare myself to do that which is only 4 hours mind you. I start listening to my body on Sunday and take it extra easy if I must. AND you bet your ass I am taking a nap on Tuesday to give my body extra rest. HOWEVER, these are not full time 40 to 60 hour salary positions like I had.

This really has taken a toll not only on my body but on my mind also. It has been hard on me. I am a strong, get shit done, speak her mind, first to lend a helping hand, ride or die friend, laughs at her own jokes, make people smile, loving mother kind of woman. BUT those right there are gone. This past year and a half have beat me down not only physically but mentally. My mind is not what it was. It is so frustrating when I run into someone now and forget their names, or their kids’ names…FRIENDS I HAVE KNOWN FOR YEARS. I find it difficult to form sentences, and words escape me. I find myself lost sometimes in my own house forgetting what I was doing or needed to do. These issues have affected every relationship in my life, with family and friends. I am just looking for a little blessing.