Coping with Serious Illness and Disability

I am finding I need more sleep now than before and that my muscles are less uncomfortable when I just let myself sleep during the day as much as necessary. Last week a part of me still felt as though I'd wake up one day and this disease would be better and that I would just get up and go for a walk around the neighborhood. The stark reality of the situation started to really sink in toward the end of the week when I tried walking a little more inside the house and landed back in the same stiffness and constant droning ache as I felt on Monday when leaving the pulmonologist's office. 

My Sarcoidosis caused some mobility problems but mostly just when I was on my feet or walking longer distances. This experience of seizing up and losing strength when I walk to another room in the house is new to me and is requiring alot of adjustment. I had to get the power chair that I got donated from a non-profit organization fixed, and at first the repair company thought it was just the batteries needing to be replaced, but now they think it's the motor. These used ones are good to have in a pinch but are kind of precarious because you never know how long they were used and how much longer they'll last. If it's the motor that could be quite expensive, and they say it might end up being so expensive I might as well get a new power chair. They brought me a loaner while they're doing a diagnostic on mine at their shop. This loaner is a Hoveround 

which drives a little differently because it has front wheel drive and that gives it somewhat of a drift that I have to compensate for. I was doing pretty well maneuvering, considering; getting back and forth to the kitchen to get food and drink, to and from the mailbox, etc. and then tonight I ripped a chunk of veneer off the door to the kitchen as I was coming out into the other room (because there is really only 2 inches clearance in that doorway) and the same is true of a few other doorways in the house; both bathrooms' doorways are actually too narrow. For those I need to transfer to a small rolling chair normally used as an office chair to get through them. I managed to take some of the epoxy I use for jewelry-making and splint the piece back onto the inside of the kitchen door by binding it tightly together with two of the cords I use as pull cords for my doors. These doors are hollow so will probably need to be replaced eventually, but hopefully this will hold together until I can have all the necessary modifications made.

I'm becoming increasingly aware of everything in my house that needs modification. It's a ranch style house and is not bad in terms of accessibility, but the doorways and cupboards are the main deficits, and I'll probably need a ramp leading to the garage and top of the driveway where vehicles usually pick me up and some modification to the area where that door is so it's not such a tight space to turn around in. The non-profit agency that had the ramp installed at my front door was going to help with doorway and other modifications but never got back to me. I'm going to have to get back in touch with them to see whether they can still do the rest. I'm not sure if the man I was dealing with is still working there or not but he was very good because he himself was in a wheelchair and understood these problems.

If I do need a new wheelchair then I might be able to get it through Medicare now that I also need to use it indoors but apparently that won't help me right now because there's about a 6 month waiting period (I guess because of all the claims to be processed because so many people need them).

I put these pull cords on some of the doors so that I can close them behind me.

Talk about DIY, LOL, these were originally supposed to be Brock Strings for a contract I had hoped to get with a vision rehabilitation clinic several years ago, but fell through. It's a good thing I'm hesitant to throw things away because they are really coming in handy right now at a very crucial time.

Tonight while getting some ice from the freezer I found that my left arm has gotten quite a bit weaker. I could barely hold the glass full of ice and had to transfer it to my right hand. This is worrisome because right now I have to rely almost entirely upon upper body strength. I know there must be assistive things that people use who cannot use both lower and upper body, but I don't yet know what they are or whether I can get them due to cost or availability. I am determined to stay in my own home no matter what. I will have to do a search for companies that sell such devices and items to help people with mobility problems. One thing I have been needing for awhile is a C table on wheels for my laptop and as a work surface over the bed. I find that it intensifies the muscle tension if I rest it on my legs, so I need it to be high enough (or adjustable to be high enough) so that it puts no pressure on my legs.

Also, I want to make some more hoop earrings for my Etsy shop since they seemed to be the most consistent sellers before, and I need to do this soon before I no longer have the arm strength. Right now my right arm is still in pretty good shape, but I don't know how long that will last. Both hips are involved, the left more than the right, so positioning can be difficult so as not to trigger the tensing that's been going on and ends up as pain even from the pressure on my butt when sitting. It's a long time until October 8th when I see the neurologist, but this disease process isn't waiting, so I need to be prepared for whatever comes.

It's been more difficult for awhile now for me to do things like thread a needle for beadweaving. Although I can do it, it takes much longer. At first I thought it was my vision but doing it with magnification didn't make it better and I realized it was my fine motor coordination.

Carmella was a little nervous the first few days I had to use the wheelchair indoors, but is gradually adjusting, learning not to take advantage of when I open the door by galloping out uninvited. She senses that something is wrong, sniffing and licking my legs and sort of hovering around me when I'm in the kitchen.

Before my old laptop went on the fritz I had bought a program called Kindle Publishing Pro in order to write a book (and maybe some shorter things) that I could market on Amazon, but that got corrupted and wiped out the first chapter and part of chapter 2. I am not sure how to download the program again, but I think what I will do this time is write it in Microsoft Word and then try to get the Kindle program downloaded again and copy and paste it from Word into Kindle Publishing Pro, so it will autoformat for Kindle. Once I get this completed this is something I can sell to help with out of pocket expenses and (if it generates enough income) maybe also to help my son after his surgery. I hope that my experience will be helpful to others going through similar challenges.

Chronic Disease Strikes Again - Part 2

While waiting for oxygen to be approved by Medicare I am taking the necessary steps to get back on the Marshall Protocol. There have been a few changes to it in the past 10 years I've been away, most notably that the antibiotics are no longer necessary. Trevor Marshall (the originator) has found out that Benicar (Olmesartan Medoxomil) does quite well in addressing the underlying pathogens on its own. (For those who don't know how this works in the treatment of autoimmune disease be sure to read this .

10 years ago when I had to go off the medication the out of pocket cost was $120/month. I checked with local pharmacies; CVS and Walmart and was shocked to discover the price had skyrocketed to around $1400 for a one month's supply at MP dosage (a 40 Mg. pill every 4-6 hours).

Back on the Marshall Protocol study site I found that almost everyone except those with the best insurance coverage were getting theirs from Canada in generic form.

Americans can order a 3 month's supply without raising any eyebrows with customs. I just received the prescription from my doctor today and am getting ready to fax it.

I had to order it on a credit card although it's much less expensive from Canada than it is anywhere in America, so I am doing this on faith that I'll make that money back through sales or whatnot. On my very low income it was a big expense. The generic I'll be getting is made in India.

I just found out my application to Prescription Hope was accepted. This is an organization that will advocate on behalf of the patient to get medication donated from the manufacturer. They charge for the advocacy only and it's  $24.00 a month. for each medication ordered. It still remains to be seen whether the maker of Benicar, Sankyo will release the full dosage I need, as in the past they've only allowed people to have 1 pill a day; the dosage used to treat high blood pressure. If the manufacturer doesn't agree to the full 6 pills a day I may still need to order from Canada when I need the next refill.

I am trying to find a representative to market some of my jewelry to shops in the Southwest to get it moving faster. Etsy alone is just not cutting it. So far I have been unsuccessful at finding one but am still looking.
I'd like to find a good market for the beadwork, especially. Since my medical out of pocket expenses are going up I really need to be bringing in more money on a regular basis.

Recently I purchased Kindle Publishing Pro software to write a book with. I had the first chapter written when I discovered a bunch of files on my computer were corrupted and one was the book. I'm dreading it but will have to reinstall Windows 8 which is a huge job to then put everything back the way it was on my computer, so I may wait a few days to do that. Last night I was on it for 6 hours with tech support to troubleshoot and then back things up that will need to be saved, and I woke up feeling really awful today. It was just too much.

The proceeds of the book (if I can get it to save next time) will help defray some of my medical costs and also maybe help my son with his future medical costs for his condition.

I've made a playlist on Youtube of my favorite songs which I can listen to as I'm working on the computer. Between that and watching comedy I'm processing this as I navigate the weeds of the healthcare bureaucracy. Although there are lots of barriers to overcome I am beginning to see a glint of light at the end of the tunnel.

This is Your Face on Medicare and Medicaid

Imagine that you have never seen a Dermatologist because finding one in the private sector who takes your insurance is like finding a needle in a haystack.


Carmella's Mange is doing better except for her persistently red snout (and paws which she keeps trying to lick).


I could call her Rudolf the red snout reindeer!


She made friends with the boxer next door and I took some very cute pictures of them playing through the fence.



I have been spending most of my time trying to find the specialists I need for my own health problems. One of my doctors stopped taking Medicare altogether and it was the best doctor of all of the ones I see.

That has been a fulltime job in and of itself, and now I also need to see a Dermatologist at Emory but the soonest appointment isn't until August. They are that backed-up! I have some dark areas on the right side of my face that may be melanoma, and a number of other complexion problems that have never been evaluated that have been brewing for a number of years.



It seems less and less doctors are accepting Medicare and even fewer accepting Medicaid as coinsurance. I am already forseeing that I will probably have to see at least two more in other specialties as well and am really afraid because I wonder with these forms of insurance whether I'll really get the level of care I need. The amount of work this is requiring is taking up all my time now when I'm not in bed resting.

Apparently the repairman who tore my brand new linoleum in the kitchen, bashed into my railing in the driveway, and made the crooked and uneven gate to my front porch entrance has decided to hone a crisp sense of entitlement, so he will not be asked back. People with that kind of attitude don't deserve repeat business, and I don't want him doing anymore damage to my house. The jerk really needs a lesson in humility. In this economy nobody can afford to give customers "the finger" like that. It looks as though it will have to be done over; at least one half of the room. I hope to hear something on Monday from Lowes (a real repairman) to set up an appointment for a price-quote. At the rate things have been going the entire floor would have eventually gotten peeled like a grape by Carmella if something is not done and soon because those edges stick up. I have tripped over it a number of times and stubbed my toe, especially just after the guy tore it moving my refrigerator. A family member is going to cover it, or I'd really be out of luck, as I don't have that kind of money.


My son gained a job briefly and has been laid off again. The town he lives in is very small and he's worked at a number of places already, so I don't know what he's going to do.

More fodder for letters to Barack Obama, I guess; all of these issues.

One hopeful possibility on the horizon is that when looking on Emory Clinic's website I came across a doctor who is doing research on a new stem cell technology to regenerate bone!

Those of you who have been diligently reading my blog will remember that I had rapid bone loss in my jaw several years ago when I almost died because of an acute flair-up of my Sarcoidosis. This bone loss was very aggressive and happened within only 5 days. I had some trouble getting help with it because one periodontist didn't want to bill it as medical because the area of the bone loss is in my mouth and billed it as dental which is not covered under either Medicare or Medicaid, so of course my insurance did not cover any of that visit. That was when NIH was just beginning to prove that bone loss around teeth can be caused by autoimmune disease, but that research was very early and they were just establishing the connection. That guy I saw as a consult did not believe bone loss like that could happen that fast and said that I must just not have noticed it until then and it must be regular gum disease, but I told him that it absolutely did not happen before that. I was and still am 100% sure of it because the onset of all my symptoms was sudden, my gums turned black overnight and each day (for five days in a row) my teeth were further and further apart. It was so shocking and scary that I made sure to document it. Antibiotics given to me by a GP turned my gums back to their normal pink color within about another week, way before I was referred to the Periodontist. He didn't get to see it as it was happening, and I'm sure his rather disdainful demeanor had something to do with my being on Medicare and Medicaid. He seemed to view me as some kind of derelict who didn't take good care of my body. You'd think doctors would not have that kind of bias but you'd be surprised at how many of them stereoptype people on Medicare and Medicaid. I then received a big bill and did not know where to go for treatment from there. I knew that at some point the research would bear out what I was saying and so in addition to brushing I washed with peroxide and just tried to keep the area clean until another option presented itself. My GP was as clueless as I was as to where to refer me next.

The research I found the other day involves some sort of patented material that is mixed with stem cells and used as filler in the recessed bone areas. From what I understand this material allows the stem cells to take hold and grow new bone onto existing bone (I guess the same way potting soil or fertilized fortified soil does in planting seeds.)

Well, I wrote the doctor in charge of the study and told him my situation and he thinks it would work for me! He said he has never worked with bone in that area but it should be no different than long bone.

I'm thinking that I may need to first confirm whether any current bone infection still exists and if so how far it extends beyond the jaw and address that. It occurred to me that if I have ongoing bone infection that could account for the way I've been feeling lately; the all over inflammation and fatigue. With technology having advanced confirming the connection between auoimmune disease and bone loss in the jaw since I last checked, it should not be considered dental this time around. This doctor asked if I'd seen an Oromaxilarfacial surgeon and/or ENT about it and asked what they said about my bone loss, and I had not seen these specialists for that yet. That gives me some direction as to what I should do. I sent an e-mail to my GP last night. He should receive it first thing Monday. I don't know if this research doctor will want me to have been seen by one or both other specialists before I start with him or whether he can call them in as part of the process as his consultants.

The local customer never ended up sending the money for those commissioned violet leaf earrings, so I have pretty much given up hope, as it's been several weeks since she told me she was sending it.

If it wasn't for $11.00 in my bank account I would not have been able to buy any groceries this weekend.

Carmella needed her fish oil and Pet tab vitamins refilled on Friday at the vet's. She is set for about another month or so with those. I am now really broke!

My Medicare part D claim for Benicar is still up in the air. If any of you are on Medicare or Medicaid, I urge you to write President Obama and encourage him to create a healthcare system that is more equal for those who have no other insurance option. If you have about as much chance winning the lottery as finding a quality specialist, then it's almost like being uninsured. Note that if you have Medicaid as coinsurance you cannot buy another coinsurance such as AARP that more providers accept. Such a system is intrinsically flawed and should be changed. The 20% co-payment to pick up what Medicare doesn't is often more than we can afford out of pocket. About a year and a half ago I had a surgery which took me a year to pay off the co-payment (and most doctors these days won't make that flexible a payment arrangement).

http://Giftbearer.etsy.com/

Just When You Thought Things Were Going Well

It's odd that sometimes when you think things are at their best unbenounced to you they're really on the cusp of total collapse. I've been busy putting out fires. That seems to be the theme of the day. The Carmella-cam stopped working altogether and it required about 3 days of talking to 3 different companies to come up with a solution without paying through the nose. Finally I reached a supervisor that believed in good customer service and by that time I was hoarse from all the hours spent on the phone. The Geek Squad is going to send a guy over on Monday to fix it. The supervisor I spoke with on the phone said it could be a defective router and she is going to leave instructions for him to bring another one just in case. It could also be that the set-up was configured wrong to begin with and re-configuring it might fix it. I also requested that the guy speak with the camera manufacturer Linkseys to be absolutely sure that he is connecting it to the web correctly so it will not fail when he leaves.

All this came after I received some very upsetting news which required alot of extra work on my part that I should not have had to take on and then my autoimmune disease flared up horribly. The last thing I needed was to have to clean up somebody else's mess and it seems as though the ramifications just keep coming.

The one constant was that Carmella was here the whole time by my side. Thank God for dogs because if you're looking for loyalty they will never let you down. There is a permanence to them you can't get anywhere else.

The woman from whom I'm supposed to be buying the rubber stamps of my pictures has dropped off the radar again. That always seems to happen whenever I ask a question in my e-mail. If I were not so tenacious she would have lost the sale completely, but I will still place the order although this has dampened my enthusiasm to get it as soon as possible quite a bit with all the stops and starts. I'm running out of energy with all this being required to drag people that has been happening lately.

Yesterday when I went to take a bath I found that I was bruised all over. The past few days I'd been in awful pain throughout my body and then the next day it felt as though my muscles had been torn and were itching as though healing some damage. Then I noticed the bruises. That is very strange. I have had the pain many times but bruising is new. I hate to go to the doctor because he is not thrilled about having to treat something that isn't easily fixable and I have to drag him too each time I go in there. If he's tired of it that goes double for me but what can you do. We all will get something serious that we can't shake sooner or later and I don't have the luxury of going home and forgetting about it. I have to deal with it everyday whether I want to or not. Some days I barely notice it and other days I'd have to die to feel better. That is the nature of the beast. I just try to enjoy my life as much as possible, to make a difference, and make the best of it.

I see alot of parallels between Carmella and I. Even she seems to be getting the same reaction from her vet. He wants her to be instantly better and it just doesn't work that way. She, unlike me, is cured of the disease, but it will be anybody's guess whether all the damage will heal or not. I finally received an e-mail from Dr. Norwood about the possibility of putting her on an anticonvulsant. Apparently he'd tried to call Dr. Sears about it but his voicemail said that he was unable to retrieve his messages, so he never got it. He said that if Dr. Sears thought it was worth doing he would go ahead and prescribe it. I e-mailed him and told him Dr. Norwood was trying to get ahold of him and have not heard back. I wrote Dr. Norwood and asked whether Klonapin would be safer than Phenobarbital in terms of risk for liver damage and said that I would hate for her to have to tough it out for at least 4-6 months while waiting for her body to take over and heal the jerking and that it must really be making her tired and sore to have that constantly. Dr. Norwood has fallen out of contact again after my response e-mail.

One thing I have noticed is that Carmella seems to have a hip that comes out of place on one side as if it's loose in the socket. I'm not sure when that started, but I discovered it one day when I put my hand on her back and she walked forward. I could feel it. I asked Dr. Norwood about that in my last e-mail as well. I hope it's not hip displaysia. It occurred to me that it might be because she does look like she has some German Shepherd in her and that breed is prone to it.

Right now she looks very much like a German Shepherd and also has alot of Pit Bull characteristics. She's still gaining weight and has become very muscular. She doesn't have an ounce of fat on her!

Sometimes in the morning after I let her out she will jump up on my bed and snuggle up while I'm watching TV.

She has gotten better about not chewing on me but still goes through times when she gets rambunctious with open jaws, especially when she's been outside running around and chasing squirrels. Yesterday she just about pulled my arm off trying to get to a squirrel through the computer room window as I was holding onto her collar. She sounds like a hound on the hunt, desperate to grab these furry animals that frequent the back and front yards as commonly as leaves. Occasionally one will stand right in front of the window on the porch teasing her as if it knows she can't get out that way.

I got another bill from CareCredit and the total is still pretty big after Carmella's procedure and the one follow-up visit to Dr. Norwood a few weeks ago. I have a 2 day show coming up on November 14th and 15th which is this coming weekend. I hope customers are not going to be too penny-pinching because of the economy because it would be nice to be able to pay off another big chunk of that bill.

This show is one of the few a year offered by the GA. Microenterprise Network that I belong to. These shows usually are connected with various conferences. I wish they held them more often, but usually they are only offered once or twice per year. The entry fees are relatively low ($50 or $60) as they are geared towards low-income small business owners. This particular one is connected with The Refugee Women's Network, Inc. and takes place at a hotel in downtown Atlanta. The location is good and I usually do well at conferences of this type.

Yesterday I spent all day literally just organizing my jewelry and putting price tags on items that I'd been listing on Etsy since my last show. I didn't realize how long it had been and just how much inventory I'd built up in recent months. The gray duffle bag I carry to shows weighs a ton and I have about 4 large ziplack bags full of jewelry, a full earring rack which holds about 24 pairs of earrings, more on earring cards, about 5 stand-up flocked necklace display boards, and a few rings, not to mention a whole tray of softies bracelets! Since I have nobody to go with me I have to use a minimum of small displays; just what I can carry. I often wish I could have a more interesting set-up, but that would involve more hands to carry it, and as I don't have a vehicle that would be next to impossible. I'll be happy if I can sell half of this stuff. That would lighten my load considerably.

Last week I finished a copper bracelet that is along the same lines as the piece "Hint at Something Deeper". I figured out that if I used a certain type of beadcap it looks like the seedhead of a poppy.

Copper Poppy

http://Giftbearer.etsy.com/