Skating Photographer Jacque Tiegs Needs Prayer

[mysticchic]

An update, I am not going to get better. They are figuring out what is causing my immune system attack my brain. I am going to have to get my home ready for disabled person. i don't want to go into assisted living in a few years, so i was told to ready my house to handle what will happen to me.
My legs already give way for no reason. I have more test in the next 2 weeks. I am hoping we get more answers. I am also going to go to 2 more specialists. Once again thank you for your kind well wishes. it means a lot to me.

 

[aftershocks]

So sorry to hear this Jacque. But at least you have more answers and know what you need to do to prepare going forward to be able to stay in your own home. My continued prayers and best wishes that you can manage a way to enjoy the best quality of life possible, and also be able to continue partaking in your enjoyment of figure skating.

 

[mysticchic]

Hey all, I thought I would do an update here. My autoimmune system is attacking my brain and body. They are doing a lot of test and every inch of me has been xrayed, MRI, EEG, EKG, and more. I've had at least 40 vials of blood taken out of me. Now it's waiting time. They are also doing genetics and DNA testing.
what we do know is the outer lining of the nerves from my brain to my body are being attacked. when this happens, the brain can't tell the body what to do. right now it's not bad. i start to walk and all of a sudden no legs or my legs go numb and i can stay up, but the legs become jelly. Same with my arms. arms are mainly in the morning. which I can deal with, but i can't get coffee. lol.
They have confirmed I have RA and sjogren's syndrome, so far. lupus and ms have been bandied about.
I have a stimuli issues with brain. If you want to read about it, here is a good link. http://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-flooding
2 weeks ago I was in the hospital for pneumonia and between the iv steroids and a roommate that had every member of her large family in there, I was in crisis mode. unfortunately, the unit i was in, the nurses had no clue what i was trying to tell them, and they made it worse. when i get like this, it's like a full born panic attack and i become blind. my new brain doesn't know how to settle itself down. so i go into full flight or fight mode. I tried hiding in the bathroom, but the nurse just yelled at me.
after 36 hours, a respiratory therapist that was on duty who works the brain injury unit came an saw what condition i was in. She told the nurses what was going on and they put me into a private isolation room. after a few hours I calmed down. Lighting, smell, stress, noise, movement and all can set this off. I just wanted to go home by then. home is my safe place. i have episodes here, but i feel safe and can navigate the house blindly. The kittens and cats are great to.
It's an issue i work on a lot. it's just training my brain what to do. I can handle 2-3 people now in the same room. my house has soft lighting and things. i have scents that calm me down. I am fine if i have my focus things. computer is one of them.
Good news! I have a seasonal job with Amazon answering phones from drivers and giving them codes. it's slow moving and the hours are when my body and brain are working the best. Amazon has been wonderful and has a division that works with me.
I had to get the job. The bills are piling up from test, therapy, ubers, vitamins and doctors/hospitals. i don't have enough income to get a home loan. i also need to make my bathroom handicap accessible. i can't get in and out of the tub, so it's been 22 months since i have had a shower or bath on my own. the door needs to be widen and I need a special higher toilette. I also need a bed that won't hurt me. i can't do those posterpedic beds since i am allergic to the foam. So I am thinking a waterbed. i had one in the 70/80s and it was perfect. Also, I can heat it at night and that should keep my joints happy.
Social security is trying to throw a wrench into my working. Amazon is going to try and work with them.
I'm doing good mentally. My new brain doesn't allow me to dwell on things. I still have kittens and how can you be depressed with kittens around. once in a while i will throw a pity party, but it doesn't last more then a day. You need to be able to mourn to move on.
I have eliminated a lot of negative people from my life and have some of the best friends anyone could have. My neighbors have also been wonderful. giving me rides when they can, and checking in on me. i have a girl that comes in every other week who does the tough cleaning and I can maintain it between times. We are working on organizing right now. she is also a CNA and when the time comes, she will take over medical care so i won't have to go into assisted living.
so that is about it for now. thank you for all your prayers and support. It means a lot to me.

If anyone has suggestions on beds, i am open. i have a pillow top, but i am up every hour in horrible pain. also it's too high and is a fall issue.

 

[rfisher]

Have you applied for Medicaid? If not, you should. Are you allergic to all foam products? I use a memory foam pad for my son on his hospital bed. The problem is if you want a fully electric bed (bed height is electric) you have to pay the difference. If raising and lowering the head and feet is all you'd do, Medicaid will cover the cost. I'd say what you really need is a good case manager to help you find the services and things you need. Ask your doctor to refer you to a social worker at your hospital and see if they can help.

 

[barbarafan]

Hey all, I thought I would do an update here. My autoimmune system is attacking my brain and body. They are doing a lot of test and every inch of me has been xrayed, MRI, EEG, EKG, and more. I've had at least 40 vials of blood taken out of me. Now it's waiting time. They are also doing genetics and DNA testing.
what we do know is the outer lining of the nerves from my brain to my body are being attacked. when this happens, the brain can't tell the body what to do. right now it's not bad. i start to walk and all of a sudden no legs or my legs go numb and i can stay up, but the legs become jelly. Same with my arms. arms are mainly in the morning. which I can deal with, but i can't get coffee. lol.
They have confirmed I have RA and sjogren's syndrome, so far. lupus and ms have been bandied about.
I have a stimuli issues with brain. If you want to read about it, here is a good link. http://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-flooding
2 weeks ago I was in the hospital for pneumonia and between the iv steroids and a roommate that had every member of her large family in there, I was in crisis mode. unfortunately, the unit i was in, the nurses had no clue what i was trying to tell them, and they made it worse. when i get like this, it's like a full born panic attack and i become blind. my new brain doesn't know how to settle itself down. so i go into full flight or fight mode. I tried hiding in the bathroom, but the nurse just yelled at me.
after 36 hours, a respiratory therapist that was on duty who works the brain injury unit came an saw what condition i was in. She told the nurses what was going on and they put me into a private isolation room. after a few hours I calmed down. Lighting, smell, stress, noise, movement and all can set this off. I just wanted to go home by then. home is my safe place. i have episodes here, but i feel safe and can navigate the house blindly. The kittens and cats are great to.
It's an issue i work on a lot. it's just training my brain what to do. I can handle 2-3 people now in the same room. my house has soft lighting and things. i have scents that calm me down. I am fine if i have my focus things. computer is one of them.
Good news! I have a seasonal job with Amazon answering phones from drivers and giving them codes. it's slow moving and the hours are when my body and brain are working the best. Amazon has been wonderful and has a division that works with me.
I had to get the job. The bills are piling up from test, therapy, ubers, vitamins and doctors/hospitals. i don't have enough income to get a home loan. i also need to make my bathroom handicap accessible. i can't get in and out of the tub, so it's been 22 months since i have had a shower or bath on my own. the door needs to be widen and I need a special higher toilette. I also need a bed that won't hurt me. i can't do those posterpedic beds since i am allergic to the foam. So I am thinking a waterbed. i had one in the 70/80s and it was perfect. Also, I can heat it at night and that should keep my joints happy.
Social security is trying to throw a wrench into my working. Amazon is going to try and work with them.
I'm doing good mentally. My new brain doesn't allow me to dwell on things. I still have kittens and how can you be depressed with kittens around. once in a while i will throw a pity party, but it doesn't last more then a day. You need to be able to mourn to move on.
I have eliminated a lot of negative people from my life and have some of the best friends anyone could have. My neighbors have also been wonderful. giving me rides when they can, and checking in on me. i have a girl that comes in every other week who does the tough cleaning and I can maintain it between times. We are working on organizing right now. she is also a CNA and when the time comes, she will take over medical care so i won't have to go into assisted living.
so that is about it for now. thank you for all your prayers and support. It means a lot to me.

If anyone has suggestions on beds, i am open. i have a pillow top, but i am up every hour in horrible pain. also it's too high and is a fall issue.

In your list of vitamins are u taking Spirulina?- (blue/green algae). I have started taking it due to brain fog I have had for over a year since I was put out 3 times in 18hrs re:dislocated shoulder...It wasn't going away so I checked with an expert. I only take one a day & right away I am a lot more with it but also my energy has come back and I am sleeping like a log..I looked it up and it is a SuperFood which boosts immune system helps fatigue,is a natural antiimflamatory & helps with a bunch of other things. I have picked some up for my daughter who has fibrom.but I have not delivered it yet. I have also picked her up Collugen to help repair her joints.

 

[Debbie S]

I'm sorry, @mysticchic. I hope you are able to find a comfortable bed and can get some help navigating resources.

 

[skatfan]

Jacqui - thanks for the update-you obviously have been through a lot- but it sounds like you are working through issues. Glad you have supportive folks in your life.

 

[mysticchic]

@barbarafan I haven't tried that yet. The brain fog comes from a build up of fluid from laying down and leftover swelling. I also take certain meds at night that make me dizzy. I have to ask about which vitamins to take. With all the testing going on, we are being careful what I can put into me. I never knew what shows up in test. I use a lot of oils. But those show up in test. Right now my body is retaining calcium. low on D and C.
@Debbie S me too. I got a 4 inch foam pad and woke up the next morning covered in welts and my face was 4x it's size. We tried to cover it with a special sheet, comforters, took it outside and my friend washed it (we were told the chemicals might cause it) and I am that sensitive. I can't even use bandaids. They make the old waterbeds. Pretty cheap except for the pedestal. Or they have them like a regular bed. those are expensive. One thing I like about the waterbed idea was you can make it nice and cool or hot. Also i can make the support to where i like it using a hose and water. And it sits low to the ground.
@rfisher i applied, but I get a small retirement check, that is just enough for that wonderful spend down amount. which is about the amount i get total a month. I have had several case workers, and none have been very helpful. I am considered high functioning right now (as in I can think and ask questions), and so I get very limited time. They are all over worked. The county was going to do my bathroom, but then I read the rules. They will do it the cheapest way possible, with their workers who charge double. You don't have to pay back until you sell the house. But the kicker is They get their name on my house and I can never get a loan on the house until they get paid. I have a contractor friend who can do a nice bathroom for 1/2 the price with much better materials. So hopefully with this job I can take out an equity line of credit. it is the last thing i want to do. But...

 

[rfisher]

Ok. I had to ask if you had a case manager, but in truth, I've never had one who knew more than I did. You are in a dilemma with the retirement keeping you from qualifying for medicaid. I take it your state probably didn't do the expanded medicaid which might have offset the difference. Spend down as much as you can and then see what you can do.

So, you have to be creative. As you know there can be huge differences with costs of supplies between companies and finding help with remodeling can be a nightmare. My advice, look for a good carpenter, not someone who "specializes" in handicap remodeling. The latter often prey on people who need help the most. But, a good carpenter can do what you need. Actually, a good handiman can. I just saved thousands of dollars getting a ramp built by using a good handiman who did exactly what we needed.

Be careful about OTC supplements. The problem with them is they are unregulated and you have no idea what you are really getting. They can cause more problems than they can help. Read labels carefully. Foods are usually better than supplements.

You may be able to purchase refurbished equipment or even find what you need on Craig's List. You just have to keep looking. Good luck.

 

[barbarafan]

@barbarafan I haven't tried that yet. The brain fog comes from a build up of fluid from laying down and leftover swelling. I also take certain meds at night that make me dizzy. I have to ask about which vitamins to take. With all the testing going on, we are being careful what I can put into me. I never knew what shows up in test. I use a lot of oils. But those show up in test. Right now my body is retaining calcium. low on D and C.
@Debbie S me too. I got a 4 inch foam pad and woke up the next morning covered in welts and my face was 4x it's size. We tried to cover it with a special sheet, comforters, took it outside and my friend washed it (we were told the chemicals might cause it) and I am that sensitive. I can't even use bandaids. They make the old waterbeds. Pretty cheap except for the pedestal. Or they have them like a regular bed. those are expensive. One thing I like about the waterbed idea was you can make it nice and cool or hot. Also i can make the support to where i like it using a hose and water. And it sits low to the ground.
@rfisher i applied, but I get a small retirement check, that is just enough for that wonderful spend down amount. which is about the amount i get total a month. I have had several case workers, and none have been very helpful. I am considered high functioning right now (as in I can think and ask questions), and so I get very limited time. They are all over worked. The county was going to do my bathroom, but then I read the rules. They will do it the cheapest way possible, with their workers who charge double. You don't have to pay back until you sell the house. But the kicker is They get their name on my house and I can never get a loan on the house until they get paid. I have a contractor friend who can do a nice bathroom for 1/2 the price with much better materials. So hopefully with this job I can take out an equity line of credit. it is the last thing i want to do. But...

check out company........www.organika.com
look up benefits and then check with whatever specialist you are using to clear intake.

 

[mysticchic]

Ok. I had to ask if you had a case manager, but in truth, I've never had one who knew more than I did. You are in a dilemma with the retirement keeping you from qualifying for medicaid. I take it your state probably didn't do the expanded medicaid which might have offset the difference. Spend down as much as you can and then see what you can do.

So, you have to be creative. As you know there can be huge differences with costs of supplies between companies and finding help with remodeling can be a nightmare. My advice, look for a good carpenter, not someone who "specializes" in handicap remodeling. The latter often prey on people who need help the most. But, a good carpenter can do what you need. Actually, a good handiman can. I just saved thousands of dollars getting a ramp built by using a good handiman who did exactly what we needed.

Be careful about OTC supplements. The problem with them is they are unregulated and you have no idea what you are really getting. They can cause more problems than they can help. Read labels carefully. Foods are usually better than supplements.

You may be able to purchase refurbished equipment or even find what you need on Craig's List. You just have to keep looking. Good luck.

I had to take the retirement. I had no choice. I couldn't live on 800.00 a month. The retirement check is only 500.00. I had a choice of turning over the entire amount to the state or learn to live off of it. I got creative. But with the tons of medical bills, ugg. There was some fundraising and i gave the hospital 1/2 of what I owed (all of what was raised). But there are the return admits ect. I had a group of nueros who got me carecredit and proceeded to spend every penny of it at their office. They had therapy, MRI and all kinds of stuff. There is a real racket in this medical stuff.
I have some really good friends from my softball days who have repaired my electric, my furnace and a ton more things for cost. One of the guys offered to do the bathroom and porch at cost + 1 guy for labor. So it will save a ton of money. He also has a lot of stuff left over fom th jobs.
I still need dentures (I have applied at dental schools and more, but the waiting list are crazy). I lost most of my teeth from the autoimmune and respirator. I also need special glasses. Each month is an adventure to see what I can get paid. The past few months, the test and having pneumonia have just thrown me off. Doctors around Detroit won't even see you until you pay before you go to the back. I've also had MRI, my entire body x-rayed, blood draws, EKG, EEG, therapy, and more. The co-pays kill me and sometimes i have to use Uber. I have friends come in and help me with laundry and I have a great girl who is amazing how much she gets done in a few hours.
I was advised to get my house in order in case I would have to sell it some day.
The county was a joke. They wanted 5k to come in and install a cheap surround shower (you can buy those for under 1k) and throw up some tile and the toilet.
It's MI and republican so I doubt we have expansion.

check out company........www.organika.com
look up benefits and then check with whatever specialist you are using to clear intake.

 

[mysticchic]

I have looked into them. Now that I work for Amazon, they have a wellness program. I can speak to a nutritionist and herbalist. I am really looking forward to that.
Medicare and Medicad is a joke. They have things that are covered and that are not covered it's always a surprise . My rates, deductibles and copays go up Jan 1st.
I have used every penny raised to pay hospitals and doctors. with the brain they just don't know what is going to happen. So they send you out for test and other doctors. i have an infectious disease doc, RA doc, nuero, Physical med,Puluminoligist, gastro cardio,and my GP. They also want me to see a dermatologist (I am getting rashes everywhere) and physic doc for testing. then there is therapy 4 times a month when i work on balance issues and falls. the best doctor out of all of them turned out to be the physical med doctor. He explains to me everything. we work on the physical issues. He was able to get me to the right doctors. He also injects something into my joints (and drains) to make them feel better. His staff is also wonderful and caring.
I need dentures and special glasses. Those are just going to have to wait for now.
I have a friend who is a PA at a hospital that works in nuero ICU and when this all came down she came over and explained things and allowed a million questions. She helped me put a plan in place.
I am cutting down in kitten rescue until i get used to working. It's the slow time of year anyway. I have 2 cats that are mine and 2 kittens. The house stays so much cleaner!
I will get one of the guys i know to but the platform for the waterbed.

 

[purple skates]

@mysticchic, Michigan is a Medicaid expansion state. However, I don’t know how that would affect you as I’m not familiar with Medicaid, just disability-related Medicare.

ETA: Link to the state’s site for the expansion

I know I’m not in your county (you’re east side, right?), but I can see if there are any resources that I have access to that might help you with information on Medicaid etc., if nothing else. It would have to wait until Monday, though.

 

[mysticchic]

@mysticchic, Michigan is a Medicaid expansion state. However, I don’t know how that would affect you as I’m not familiar with Medicaid, just disability-related Medicare.

ETA: Link to the state’s site for the expansion

I know I’m not in your county (you’re east side, right?), but I can see if there are any resources that I have access to that might help you with information on Medicaid etc., if nothing else. It would have to wait until Monday, though.

I am in Macomb. I am working with a caseworker for working at SS. So far everything she has told me is wrong. The buy into Medicaid is higher then my medicare. I have pages and pages of places that help. I've called every single one and the waiting list are 2-3 years. Funding is very limited.

 

[purple skates]

That really sucks. Well, I do have contacts in Washtenaw County if you want me to check with them to see if they have any suggestions for you.

 

[mysticchic]

That really sucks. Well, I do have contacts in Washtenaw County if you want me to check with them to see if they have any suggestions for you.

Thank you. I might take you up on that. But while I am with Amazon until Jan, I don't qualify on anything. i got my 1st paycheck last week and just paid on my carecredit card. My next 3 paychecks will go to pay that one off. then it's off to the next one and the one after that.

 

[Mozart]

((Mysticchic))