I require your assistance, as a mendicant soliciting alms. | General Discussion | Forum
January 7, 2011
Greetings fellow CoBM members. My name is Tiffany, you may have seen me in here on occasion, or if you ever go to the chat room you likely will see me there almost all the time. I have found myself in the position of becoming a pauper and hope that my fellow CoBM members might be willing to lend a hand.
I have spent my entire career working in social service of some type. Since I was a teenager I've worked with developmentally disabled and mentally ill children teens and adults in just about every capacity from schools to residential to outpatient clinical services and counseling.
Most recently I was managing a group home for developmentally disabled adults when I got sick. I began losing motor control of my entire right side. I was having difficulty walking, holding items, writing, and then even talking. Finally I went to the hospital and after many uncomfortable tests I was diagnosed with Multiple Sclerosis. I was told I would need 4-6 weeks recovery time and was put on medication that is an intramuscular shot once weekly, gives me a fever, chills and terrible muscle aches for a full day following its administration, and which I have to take for the rest of my life. In addition, I have to see multiple specialists at a $60/each copay and take multiple medications for various other symptoms. The costs are enormous.
Three weeks into my 4-6 weeks of recovery I was fired from my job due to excessive absences. I've filed a complaint with my local EEOC office, but have no idea what, if any, return I may see. I'm in the process of filing for SSDI, but it generally takes 9 months to 2 years to be approved.
In the meantime, my husband and I are now trying to live on a single income, where before we barely got by on our dual income. Adding in the exorbitant medical costs, we are unable to stay afloat and are having to rely on the kind donations of friends and strangers alike to manage everything. I have often had to put off Dr's appts or hold off on purchasing much needed medication until such time as we had funds available to afford them and I fear that between this and the stress I may find myself having another MS flare up in very short order.
My husband created a donation page through a site called YouCaring.com, http://www.youcaring.com/fundr…..fortiffany. We have received many kind donations, but unfortunately it's not enough. This month we had to decide whether to pay the car payment or the rent, and went with the car so that my husband would not lose the means to travel to work. My youngest brother, who is still a baby in my eyes, paid our rent. It truly is a desperate situation.
I realize that times are tough and everyone is in trouble of some sort at the moment. My request to you is that even if you are unable to donate, please post the link elsewhere, on any other message boards or Facebook pages, to try to get the word out. Some of my medications only cost $10, so a donation of $10 will get me one of my medications for one month. Currently I am taking about 10 prescriptions, plus 5 different necessary over the counter vitamins or other medications each month ranging in price from about $10 to $30, and just my regular Dr's appts alone are $180 each month. These are all new expenses in addition to our regular bills, which we were already struggling to make on a dual income.
Please, even if you can't donate, post the link anywhere you can think of. We need all the help we can get.
Thank you so much for hearing me out. Anyone who has anything questions, or just wants to talk and meet me, feel free to email me. firstname.lastname@example.org
May 24, 2012
I am so sorry Tiffany. I don't even know how to respond!! I will keep you in my thoughts and try to find room in my budget to help. We are a family of 5 and we live pretty tight. Thank goodness your husband is a physical help mate for you… what a true gift in this life to have a partner. I totally understand how challenging it can be when your body simply won't do what you want or need it to. I broke my leg in about 40 places and I couldn't do much. I have also lost my hair for no apparent reason several times so far. The reasons for all of the suffering elude me.
Please try your best to keep your chin up… are you okay today? Life is so fragile. Have you been able to keep your piercings during your treatments? Is there anything keeping you more in touch with yourself through this?
January 7, 2011
The first time I went to the hospital they made me take all my jewelry out for the CT scan. They said if I didn't take it out they were going to cut it out. As it was, it took a couple of pairs of forceps to get one of my nostril piercings out. I about cried. I never felt so naked. After that they were a little more cool. I got half a dozen MRIs and was able to leave in my nostril jewelry. The earrings are significantly easier to put back in.
I am mostly just tired all the time but some days I feel very sick. Those days I will sleep a LOT, and I have trouble getting around. My balance will be so off and/or I feel so dizzy that I walk into walls and fall over a lot. The medication also makes me quite ill.
I keep wishing that I can get a tat to mark this change in my life, but as we can barely afford food and meds, it's going to have to wait.
Thank you for your concern. Even if you can't contribute, you can post the link elsewhere. That could prove to be just as helpful.
I am try to keep my chin up. Some days are not so easy. I'm just taking it day by day.
Really sorry to hear about your hardship Tiffany.
It's a disgrace that in such an affluent country this is allowed to happen.
I hope one day this will all make sense to you, and you can accept how life has turned out. My thoughts are with you through this.
January 7, 2011
Thank you, Oakbear, for your kind words. It would be easier to make some sense of all of this if it wasn't one thing in a long list of things. See, I already have marked disk degeneration in my back and it was kind of a waiting game as to when it would rob me of my mobility, or when I would have to lose my disks. I have a lot of nerve damage in my low back, and it hurts to walk pretty much every day. I am against having my disks removed because they'll fuse my vertebrae, and I will lose range of motion. I've been a bellydancer for almost 10 years. If I lose my range of motion, I can't dance. Well, now this disease could potentially take everything. My mobility (no dancing), my vision, my hearing, my voice. Singing and dancing are two of the things that bring me the most joy. I know it sounds weird, but driving is one of my favorite activities, it reminds me of my freedom and independence, of times when I had neither. This disorder is seeking to rob me of so many things I hold dear. Having a real hard time making sense of it. If I can get it stabilized (which requires money) I may be able to go back to school, may be able to continue my career as a counselor, may be able to continue to help people, and that might bring me some satisfaction. But a life without music? I don't know how I'll handle that.
My husband is rushing to finally record me singing just in case I lose my voice. MS can alter pitch, timber, range and quality. Best case scenario, I learn to sing in another range, worst case scenario, I just can't sing anymore. You know what it's like to speak when you've lost your voice a bit and you sound like a prepubescent child? I don't want to sing like that. heh
So, this is a lot for me to process.
I do appreciate your concern I need your kind words right now. It's dark days for me. I need all the help I can get. Monetary, spiritual, friendly support, medical, psychological… hehe
Anyway, thanks again.
May 24, 2012
On Sunday I found myself dancing with 8 children around me. A random guy was playing guitar in the alley between beautiful historical buildings and me and my 2 little ones (ages 3 and 4) started dancing. Before I knew it I was surrounded by kids… holding my hands and spinning and laughing and smiling with every cell. None of the other adults danced. I have broken my leg in about 40 places and was told I would never walk again. The music was blues and jazz and bluegrass. It was gritty and raw and twangy. I thought of you and I took a very intentional moment while in movement to hope for your recovery.
January 7, 2011
January 7, 2011
For those of you interested in an update:
I've finally had a chance to update the donation page a little. I gave it a nice, neat URL to be easier to remember. It's https://www.youcaring.com/helptiffanyfightms Hopefully that will make things a bit simpler.
As far as updates go, I DID manage to start working in May, however I've also been dreadfully ill the last few months. As such, I only worked 4 hours last month and so far this month, none. Before that I was only working around 5-7 hours a week, so the job really isn't much help and was actually a hindrance because I was expecting far more hours, so I dropped my SSDI claim in May.
I've since reopened the claim. We will see if and how much damage my very part-time job has caused.
I'm also on the search for a new neurologist. Even though they don't dispute the fact I have MS and there's plenty of imaging to back up my symptoms, I've so far had two neurologists try to blame my symptoms on medication side effects and psychological symptoms. This by itself does not bode well for my social security claim, and in order to set the medical record to rights I needed to find a neurologist immediately who actually cared enough to not dismiss me, but unfortunately I've not had the money for copays to find a new neurologist. In the meantime, my increasingly debilitating symptoms have either gone unrecorded, or have been recorded then flat out dismissed as being psychosomatic and/or med side effects, which not only looks terrible for my SSDI claim, but also means that I've been refused treatment on the occasions that I HAVE been able to scrape the money together.
I have multiple specialists that I absolutely must see, but cannot afford. Some of them I've been putting off for nearly a year.
So, I'm back to square one, begging for money. My health is so tenuous, I've frequently spent consecutive days or even weeks basically bedridden, unable to prepare food for myself or even to fetch myself something to drink. I'm often so weak and dizzy that just standing up from the bed or a chair is difficult, and can even be dangerous. I had a very nasty fall just a couple of weeks ago, my hip and should still hurt a great deal from it. I'm tired of living my life this way.
I actually have not been able to dance in almost a year. At first I tried to keep up with it but I got so much weaker and sicker and it's to the point where I'm lucky if I can walk around the house safely, let alone actually dance. I've lost one of the most precious and joyful things in the world to me.
Please, any help that you can provide would make so much difference, and if you can't afford to donate, which I truly understand, at least repost my link. Until SSDI comes through (which may very well be years from now) we will continue to struggle this way, having to choose between meds and food, Dr's appts and bills. It's a very stressful and frightening way to live and I just want to start feeling semi-normal again.
Thanks for listening.
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