Finally, I got a new non-multiple sclerosis endeavor to talk about! Well sort of…you’ll see.
My husband and I are trying to buy a new home! Yes and I naively thought banks and/or credit unions would have a separate grant program for people with disabilities. Especially, since our income is drastically less than it was pre-diagnosis. But no, they don’t. I guess the best answer is to earn as much as you can before joining the disability club. Also, make sure you get long-term healthcare insurance through your employer while you’re eligible.
I thought that in accordance with the Americans with Disabilities Act, financial institutions would make certain accommodations. Meaning lower interest rates for people living with disabilities, but I quickly figured out they don’t. Besides the financial issues, I’ve also found myself weighing options I haven’t considered in a long time. Surprisingly, it was quite welcoming. I’m pondering things like, what’s more important, having a bigger living area or larger bedroom? Let me tell ya, I’d much rather make those decisions than what disease modifying drug to pick. I must admit, having MS has taught me not to sweat the mundane issues. Past hardships don’t seem so problematic anymore because I’m becoming immune to worrying.
But I’m still not completely enlightened yet. As it turns out, the home I really want is out of our financial reach. When will I just be satisfied with what I have or in this case, can afford? But that’s the human condition. That’s the reason for the whole stock market crash, right? I always want more. Be it walking or scooting around. I never quit. I remember a time when all I wanted was a scooter. Now, I have it, but I keep busting my butt trying to use my walker. It’s so ironic that I’m drooling over square footage that I can’t even walk?
The next day, as we were leaving to meet with our realtor the phone rang. It was my doctor. Apparently Gilenya, the pill I take for MS, is doing a serious hacking on my white blood count and my doctor wants me to go to the emergency room if I get a fever, feel lightheaded or dizzy. A low white blood cell count means your immune system is suppressed. This leaves me open to getting sick really easy. The plan is to let my counts rise again and start on the other new MS pill. He said it has just been released and is safer than Gilenya, but it’s not as affective. Ultimately, it might also lower my white blood cell count! Great! (I’m being sarcastic)
Nevertheless, I pulled it together met with my realtor and put in a bid on a new condo.
See we just got to keep moving forward with or without an immune system.
If you create a microboard, HUD is supposed to have special loans ,etc. however, I can’t find it on their website now. It was discussed at a seminar a couple years ago. I don’t think they did away with it.
Sandy,
Thanks I’ll look into it.
Just want to say hello Nicole and wish you success in the housing market. You “sound” good and I appreciate your work. Please keep on keeping on!
Tim
Tim, thanks for that.
Nicole,
I relate completely. We are in the same boat. Throw me a life-vest can you!
Keep up. It will fall into place….it somehow always does.
Sock, Its interesting the friends we meet along the way.(I do consider you a friend.) I hope that’s okay.
I wish the the best of luck on all your endeavors.
Thanks Deborah
I am 52 and worked all my life now I can’t work and my house is in foreclosure . Have been trying to get my mortgage modified it is such BS the amount of paperwork and I don’t think I will get approved so will have to let house go, already went through bankruptcy all because I got M.S. all the medical bills take a toll and they wonder why I am suicidal life sucks.
Lillian, Oh my! Hang in there. Please contact me before you do anything rash. It really sounds like you need to talk with someone professionally. I wish you the best success in future endeavors.
Hi have you all thought about a program called NACA. Look it up online. They assist in saving homes from foreclosures I hope it’s not to late. If your still in your home u should b ok also for new homebuyers the rates are crazy low. Side note its a program and it can take time. But for some its welllll worth it.
Tasha
It is interesting now, reading about people taking pills and shots of all kinds. I think back and go I was once one of those. That is until I changed my coffee (tea, hot chocolate). I started drinking ganoderma lucidium infused beverages and my MS symptons went away. As with many things dealing with MS, what worked for me may not work for you. I am so glad my life with MS is now much more managable. Best of all I don’t have to deal with freaky side effects I woud get from the “modifiers”
Elizabeth, What’s ganoderma lucidium? I’ll have to google that.
If it isn’t one thing its another. My input, the bigger the house the more to clean. I am trying to streamline my life and it is getting harder to clean my three bedroom house. It isn’t large but it becomes large when cleaning. I have relaxed my standards.
I hope you find the right medication. Fine tuning that is a rocky road. I have PPMS so I don’t have to choose between drugs, there aren’t any. I feel lucky as the process of choosing which way to go would be very hard. I hope all goes well for you.
Lisa, I like the idea of relaxing my standards. That’s a helpful way of looking at things. Thanks again.
Hey Nicole, Have you tried Tysabri? Or has anyone else on this post? I have been on it for four months now and it seems to be working (fingers crossed). I still have my days though.
Elaine, I would love to go back on Tysabri, but I have that virus that increases my cane of getting PML
I thought that was the way Gilenya worked, by surpressing the immune system so it doesn’t attack the myelin. My lymph count is 300 which is very low but the doctor said I won’t be taken off until it gets to 200 or below. How low did you go? I have felt as good as I have on the other two drugs I took before this. I’ve been taking Gilenya for over a year.
well that didn’t come out right…. I NEVER felt this good on the other two drugs is what I meant to say
I don’t know what it dropped to, It seemed like he was watching my neutrophil count
I think we all go through that shocking realization that life in the disabled lane is really expensive! Sorry about the Gilenya, and hope they find something else.
Peace,
Muff
You got that right!
Just this morning I was giving this a thought ” Where is the EASY button”? Nothing is getting any easier .. and a disability puts us at an additional disadvantage… hmmmm.. just does not seem fair.. but you are right , we have to keep on trucking…
I’m in my own home, still a few more years on the mortgage… but with less income now.. any speed bump in the road can set us back.. even so, I’m still not giving up!
Ella
You are right nothing gets easier. But I find the quicker I learn to accept and adapt to what is. the better everyone is.
I thought BG12 was supposed to be the stronger of the 2 oral pills from the past few presentations I’ve seen. If that is the other oral pill to which you are referring, I wouldn’t worry you are taking the pill less likely to preserve your immune system. Sorry the other one isn’t working out.
On the house front, it’s really hard to be satisfied. I know the house my wife and I bought is a dream house for many, but some of the reasons we bought it no longer apply. Times change along with our needs. For us, getting redistricted to a lesser school (and bad for special needs children) means we will move before our 7 year old leaves elementary school. I dread the whole process. Still, the dream of a new “perfect” house part is fun, no? Looking around also brings into focus how good we have it now.
well lived, It was Gilenya that dropped my WBC count. I was otherwise doing well with it, Is BG12 out yet?
On the home front I think we are getting closer, fingers crossed.
The last I heard on BG 12 was due in December. If you need a wash out period between the drugs, December would be close to when you could start any way. I don’t know if there is a wash out period, but with new drugs there often is, especially for those new to the market so they can isolate problems as resulting from the new drug, not the old or mix.
Thanks for the info.
Goodluck house hunting! We remodeled our home 4 1/2yrs ago & sort of planned for my later declining & I’m glad we did. Our bedroom is big enough, but all we do is sleep in it; just be sure you can turn around in it & pas thru the hallway or door easily in your scooter, but what I am really proud of what we did is our bathroom. it is 20 ft by 8 ft. I can drive my scooter right up to the toilet & transfer very easily. the other thing we did was put a ramp on our patio side & a ramp on our deck side. One is my of bricks the other composite decking. What a difference they have made for me! Don’t believe when someone says “yes it is handicapped accessable”. People w/o disabilities generally have NO idea what our handicapped needs are! Good luck & have fun!
Kim, Congrats on your Bathroom! That must be real nice. I know, the general public has no idea what it means to use a wheelchair/scooter has your main way of transportation.
Nicole this was right on time. I want a new house too and you may have just inspired my next entry. I do hope the new pill works for you and your blood count goes back up.
Qiana, thanks for reading and I did catch your latest post. Thanks again for the shout out.
Hi Nicole,
I had wondered how you were doing on the Gilenya. Thanks for sharing that. Has it helped in any way?
I can understand your “house lust” and your desire to move up. For me I’m in a lovely old house that I love but the rent is a little steeper than I can really afford. I’m living beyond my means. I should practice what I preach to my 28 year old daughter!
Keep writing, I love your blog.
Roberta, You’re fast. We Just posted this.
I felt fine on G but doc stopped it because numbers got so low.
Yes my name is Nicole. and I have house lust.