My Chronic Life

When I wrote about my health concerns about two weeks ago, things were looking pretty bad, but thank goodness I’m over the hurdle of that long illness. I just have to accept that when I get sick it takes my body longer than a healthy person’s body to get better. Although it turned out to be an upper respiratory infection it took about 3 weeks to recover completely. But I did lose some weight and everything else is looking good with my blood work too.

I also saw the Nephrologist and got even better news. The medication is working perfectly. My potassium level is normal, my blood pressure is fine and I don’t need to go back for a check up again for a year! Since my Rheumatologist checks my potassium every 3 months with my other blood tests, he can let me know if it gets low again.

With all of this good news I feel like wearing a good luck charm or getting a security system to ward off any more syndromes, infections or chronic illnesses. I really don’t believe in those, but if you don’t laugh about these things, you just may cry.

It’s been a long time but I’m back! My host for this blog was having major issues and it took a little over 2 weeks to get this site back up again. It sure feels good to be able to write here about health issues and to advocate for people with all types of medical problems and disabilities.

I’ve missed commenting on the blogs on my blogroll. I’ll be visiting you all soon. But for now I just wanted to let you know how much I’ve missed writing here and sharing with you.

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I’m not stressing out at all. I go see my PCP tomorrow and after 10 days of antibiotics and about 2 and a half weeks I still feel pretty awful. I have trouble staying awake, feel weak and hurt all over. My eyes are drier than sand and my skin looks like it is shedding. I have trouble remembering words and can’t put my thoughts together very well.

But we’ll see how it goes tomorrow because I’m not stressing. My blood work was normal and so was my chest x-ray. I hope I can get the flu shot even though I still feel sick. I hope I can get the Humira shot even though I still feel sick. I wish I could go far away to some place I’ve never been. I’d love to try out one of the Outer Banks rentals and pretend that I’m just fine. And I’d continue to pretend that I’m not stressing too.

Although I live in a rural area that has three hospitals and more doctor offices than you can count, is mainly populated by senior citizens and tons of surgery centers, finding specialty health care here is often very difficult.

If fact for me finding a neurologist that knows how to treat Myasthenia Gravis correctly was impossible. I have to travel over an hour to my neurologist. I’m fortunate that he is used to working with patients who live out of town and is willing to communicate with my doctors and if need be emergency room doctors here.

But, this can take a toll on me as a patient, especially when I am having a flare up. I need to have a ride to his office even if it is for a check up because I can’t drive that distance back and forth in one day. My husband has to take a day off from work for these doctor appointments. We are fortunate because his job offers FMLA, Family Medical Leave Act, so his absence is paid for.

But going through this, makes me want to research New York movers and move to a big city so I can find a specialist close to home. For those of you who live in rural areas, does this same thing affect you?

You have the right to vote! From the NP Action site:

Disabled Americans have a constitutionally protected fundamental right to vote, just like the rest of us. Beyond this constitutional protection, federal and state laws ensure access to voting places and systems. Election officials must comply with these regulations to avoid litigation. The law gives disabled voters the same opportunity to vote as able bodied citizens, even if extra assistance by election officials or poll workers is required. For example one election law expert suggested offering curb side voting for disabled voters administered by trained poll workers. In general, polling places and workers must be sensitive to the needs of the disabled and make good faith efforts to provide at least the minimum of statutorily defined accommodations at each site.

Federal laws that protect voting rights of the disabled are:

Voting Rights Act of 1965- In addition to providing sweeping protections for minority voting rights, the VRA allowed those with various disabilities to receive assistance “by a person of the voter’s choice”, as long as that person was not the disabled voter’s boss or union agent.

Voting Accessibility for Elderly and Handicapped Act of 1984- Mandated “handicapped and elderly” access to polling places, and provided for the creation of permanent disabled access voter registration sites.

Americans with Disabilities Act of 1990- Prohibited discrimination against “individuals with disabilities” and required that accommodations be made for disabled citizens at places of employment, public service, as well as private operators. The ADA was enacted to ensure that the historical exclusion of disabled Americans in numerous areas, including voting, would be scaled back significantly. Sixteen years after the passage of this landmark legislation, compliance issues remain, with suits filed against local governments to compel better and faster compliance under the law. Read about a recent case here.

If you come across any type of difficulty voting, be it gaining access to your place to vote, voting itself or discrimination from poll workers, please call the U.S. Department of Justice, Civil Rights Division at 1-800-253-3931(voice) or 1-888-305-3228 (TTY - For those who are deaf or hard of hearing). Call right from the polling place if possible. Do not let anyone take your right away to vote! There will be poll watchers available and on call all day during Election Day, November 4th.

There are also volunteers who will be manning the phones for any type of problems at the polls so that these can be handled as soon as possible. In case your issue cannot be solved right away, you have the right to vote using a provisional ballot. But that is a last resort. So please know your rights and take action by calling if there is any problem you come across.

Here is a great video called My Voice, My Vote about your right to vote when you have a disability:

It would be in your best interest to ask me where I don’t hurt. It’s been almost one week without Humira and instead of taking it easy like I should, I’m overdoing it as usual. In fact if my doctors knew what I was doing, they’d sit read me the riot act.

So let’s go over what’s been happening with me - I had a stomach virus for a little more than a week, then got sick with some other kind of an infection, got put on antibiotics and was told to rest and drink plenty of liquids.

What have I been doing? Staying up late, cleaned out the office, sat in this darn office chair for hours working on my blogs and I even did some (wait, make sure you’re sitting down…) housework. Yes, the Queen of Unclean, even cleaned one of the bathrooms. It was quite funny to see Hubby’s face.

I did have to rub it in after I did it and tell him that we needed to finish upgrading the bathroom and that I chose some Grohe faucets for this task.

After all this, I’m paying for it and hurting, everywhere..when will I learn?