So desperate!

[RockysMom]

Does anyone need medical transport to go yo the doctor?

I was without health insurance for several years but have had it all year now but have been unable to go to regular doctor or neuro all year because I couldn't climb in my van anymore. So I had a $8k turning seat installed in my van (it was a gift!) and have only used it once. The heat was a problem but tomorrow it will be cool & I will try again.

I scheduled appt.s with PCP and neuro in a couple weeks & I need to go have blood drawn next week but I will have to fast for that & am concerned about going anywhere in my power chair because I may get so fatigued that I may not be able to stay in the chair & may just slide out of it if I have to wait too long wherever I'm going! I'm concerned that with fasting for my blood draw, I will be too weak to even get in my power chair & get to the lab!

I'm having so much weakness that my main accomplishment every day is just going to the bathroom without falling in which case, an ambulance would have to come to pick me up!

Is there a type of medical transport I could have to get me there & back? Does anyone ever do this?

I'm also concerned I'm not getting proper nutrition because I'm 95% vegan but have to be for reasons Bill Clinton is one, atherosclerosis, which is in check as a vegan. I take supplements though.

And I haven't had a shower in over a month & I think I will never be able to take a shower again, how am I going to make myself presentable for the doctors?

I cry almost all day every day, sobbing, my husband is having so much trouble with that, bless his soul. I'm sending him out for some St. John's Wort right now in hopes that it will help.

[Dale76]

Have you explained this to your doctors? If not maybe phone them and explain the situation. I'm sure they have dealt with similar issues before. Wish I had more advice but good luck.

[Thinkimjob]

Oh I sympathise.
We have a "Medico" transport fellow in town. He'll take people to doctor's appointments and his van can take a wheelchair. It's a government service.

There blood collection people will come to your home, if you qualify.

Does it cost you money to use an ambulance? Ambulance insurance is part of our power bill, so it's free, but it's only to the hospital, not your doctor.

Will your doctor do house calls, if you are desperate?

As for your neuro, where is he or she? How far away? Mine is a five hour drive, and to be frank, I don't think she's going to tell me anything I don't already know.

I totally get your shower problems.

[RockysMom]

I left a message with my regular doctor about having a nurse come to my house to take my blood because there is no way I can fast, then get up and go somewhere. When they call back, I will also ask about a house call because I don't see how I can go to the doctor either.

Then I will have to find out about the neuro, he's sort of nearby but his main office is 20 miles away, and not even handicap accessible! But he comes to this town once or twice a week. So I will have to see but his receptionist is so awful, always scolding me for rescheduling or canceling.

[Diamond57]

Understand!

My heart goes out to you. Sometimes I use the Metro-Mobility even though I can still drive. Sounds like maybe you should talk to the Doc about an anti-depressant or something to relax for this time. I totally get the shower bit. When in a flare it's a teo hour production and force myself to do it. I'm even thinking cutting my hair short to lesson the time when feeling like this. Maybe fresh air would help even if it's just sitting outside. My best to you...

Susie Q

[hunterd]

do you qualify for Medicaid? Here in Pennsylvania, we have a public transportation system for the handicapped ( they have a ramp that you can drive your powerchair right onto). I would check into that first ( if you qualify for that, you may qualify for an aide who will assist you with bathing if you need that).

[RockysMom]

Thank you all

Hunterd I don't qualify for anything, Medicare, Medicaid, SSDI, nada.

My doctor's office called & cannot have the blood work done here. My insurance also wouldn't cover that but they will cover some home visits from PCP & specialists but could find no neuros in my little area who'll do that. However they gave me a home health company who can send out a doctor but only for a regular check up although the gal reading this to me seemed to be confused about the wording.

I've decided I'm not going back to my regular neuro as everything about his practice is sub par including his being on probation for several things. I will go to a new neuro at a very nice facility where I won't be kept waiting for over an hour!

So I will look into this on Monday. However the bathing thing is still no go, too dangerous by far. And I've had to start hacking off my beautiful long hair due to matting from lying down so much. It used to be so long, going down to my butt, but it will have to go & this is a type of grieving all in its own.

And I guess I will never be able to do my former livelihood again, so I should just sell my studio. It's been 4 years since I was able to do that anyway.

I'll have to do some work next week on all this but bathing is just not possible. Hubby got me some no rinse waterless shampoo but should I just use baby wipes for everything else? That doesn't have any soap in it.

[hunterd]

call your state rep and explainyour circumstances and hopefully they know of something that can help you. Something else that you may wish to consider is using a body wash and a shampoo that do not require rinsing. I do not know for sure, but I would think they could either help you directly or point you in the right direction. National MS Society http://www.nmss.org
Multiple Sclerosis Association of America http://www.msassociation.org
I hope this helps you out some.

if there is anyway that I can help you out further, please send me an email and I can see what further information I can find.

[RockysMom]

Thank you, hunterd, I will call next week & see what I can find out but our situation is very unusual. Perhaps I will email you to explain as I'm sure no one else has a similar situation. Thank you for your offer of assistance. I really appreciate it.

Thank you everyone for your help!

[hunterd]

you may be surprised at how many similar stories there are out there

[Windwalker]

I run up against the same issue. There are times that I don't want to have to go through the work of transferring in/out of car. When I get my Tysabri infusion would be a good example.

There is not a lot out there if you have to be transported in your power chair/wheelchair. However, my town has a Senior Center that provides rides for the elderly and disabled. They have a van that has an area for a chair and buckle it down.

I have used it many times, only $3 a trip. See if there is a senior center with similar service in your area. Good luck.

[RockysMom]

I've decided I'm not going to fast for the bloodwork, just go whenever & have it done, no fasting. I'll inform the doctor about this. It should still be able to check my organ function, just not the glucose level. I have a glucometer from a diabetic cat we used to have, so I can check my stupid fasting glucose level at home, even do a glucose curve and just give the numbers to the doc.

As for getting to the doc, I will just do my best with my power chair and new turning seat and I will change my appt. to a later time and stop trying to be a morning person when I'm a night owl. The heck with that - crying all day because I'm so weak in the mornings is no good. I'll take the latest appts they have and the heck with it!

[Bobby72]

a little advise

Hi my name is Bobby and I thought I,d let you know that the test that they are doing is to see what your levels have been for a little bit more than rite then or they may want to see if you are diabetic and they may want you fasting for other things too.

So here,s a little info for you some hospitals have a van that takes patients for free to and from home to the hospital and some of the Dr. offices. They do that up here were I live in the Joshua Tree area. and if not you can call your local transit company that runs the buses around town and they have a thing called ready ride or dial a ride and for handicapped and senior citizen,s they charge a lot less. I hope you can call and find out and I wish you the best of luck!

[Kimba22]

Hi RockysMom,

I'm so sorry you are having such a rough time.

If you have atherosclerosis, your doctor will also want to check your cholesterol. Unfortunately, to accurately do so, you would have to fast for 9 - 12 hours.

If you aren't fasting when the blood sample is drawn, only the values for total cholesterol and HDL cholesterol (good cholesterol) are useable. That's because the LDL (bad) cholesterol level and triglycerides (a type of fat in the blood) can be affected by what you've consumed. http://www.heart.org/HEARTORG/Condit...95_Article.jsp

Considering you are homebound (http://medical-dictionary.thefreedic....com/homebound), you would be a candidate for home health care. Your private insurance should cover it. Insurance coverage does vary, but I would call them and ask.

You would need to have at least one licensed professional see you a few times a week (such as a nurse, occupational therapist, or physical therapist,) but then you would also qualify for an aide who could help with your shower a few times a week. (It definitely sounds like some therapy would be medically warranted.) It's by no means a long term solution (maybe a month, sometimes up to two) but a thought. You would need a prescription from your doctor. Your PCP could order it. (Might be worth checking into coverage for a home care physician as well.)

The only other thing I can think of that might help that hasn't been mentioned is public transportation. I'm not sure if that would be an option where you live, but anyone with a disability would qualify to have a connector Smart bus come their home and take them to something like a doctor appointment. The cost is $1 one way and a caregiver can ride with you for free. (There's also something called "Dial a ride" that might help you, but you'd have to find out how to be ADA certified.) https://www.smartbus.org/Fares.

I hope I provided some information that might help.

Sending hugs and best wishes ,

[palmtree]

I looked into the mobility transit in our city. They said you have to prove you cannot use public transit. That means, standing outside for them to pick you up and a 4 hour test to prove you cannot get on a bus and pay etc. medical records and diagnoses don't count. You have to physically prove you are incapable of using public transit. It sounds worse than applying for SSDI.

The buses now are wheelchair accessible but that means waiting on the corner in the hot sun for a bus that will take you down the street. Then, wait in the hot sun for another bus. If the buses take you to where you want to go, that would be lucky. I live in a city with a reputation for the worst public transit system in the world. The best thing we have is the underground metro where the elevators don't work. Wheelchairs: forget it.