Wednesday, November 2, 2016

Joshua Bella in Constant Pain, fighting for health care



“ To him who dwells not in himself, the forms of things reveal themselves as they are. He moves like water, reflects like a mirror, responds like an echo. His lightness makes  him seem to disappear, still as a clear lake, he is harmonious in his relations with those around him and remains so through profit and  loss. He does not proceed others, but follows them instead.”

 

“ I exist in the depths of solitude
Pondering my true goal
Trying to find peace of mind
And still preserve my soul
Constantly yearning to be accepted
And from all receive respect
Never compromising but sometimes risky

And that is my only regret
A young heart with an old soul
How can there be peace
How can I be in the depths of solitude
When there are 2 inside of me
This duo within me causes
The perfect opportunity
To learn and live twice as fast
As those who accept simplicity.


Joshua Bella 412098
WCI,PO BOX 351
Waupun, WI 53963

born 1984, age 32
mandatory release date: 4 17
Maximum release date: 4 20

   After many years of misdiagnoses, finally three years ago Joshua Bella found out the name of the thing that caused him constant suffering- Ehlers Danlos Syndrome, a hereditary disorder for which there is no cure. He can be made comfortable enough to have a productive fulfilling life. There are different forms of the disease and he has its more severe. He is not getting the care he needs, the equipment and pain meds, the small things like help getting out  of bed and scheduling changes to comply with what he body needs. The prison claims it does all it can- by law, the prison does not have to give GOOD care, the just have to give care. How can we get him even the small items that would change his life dramatically. With luck , he will be able to get out in April of  next year- helping him to hold on is our challenge. Also FFUP is working on a class action with inmate litigators and he will be part of it.

Joshua's introduction:
   
I was born in Augsburg, Germany ,an army brat. I grew up around WI. In the 6th grade I was student council president, in7th,  I was one of the best wrestlers in the state for my age and weight and on the way to becoming the youngest Eagle scout in my family. I was also active with the military family program, chess club, computer club, year book and French club. In 8th grade my shoulders started coming out of joint and I had constant pain. Medication never helped and physical therapy brought me to tears so I started drinking every day. My life started to fall apart the all I cared about was stopping the pain that was spreading through my body and to do that I drank. When I was 19 I went to college for computer networking systems at ITT and was top in my class til I was in a DUI accident. I dropped off the map after that and gave up on life. 

Doctors couldn’t tell me what was wrong or cared to try to finut. This illness has ran my life to the ground.  3 years ago I received my diagnosis of Ehlers Danlos syndrome type three and received my first glimmer of hope for relief in 16 years but the medication given to me had bad side effects that gave me a psychotic break bringing me to prison. But instead of giving me health care, I’ve been ignored causing my health to deteriorate to the point I can barely handle daily activities and pain is so bad I can hardly think. 

WCI’s reason for not giving me what I need is if they did they would have to give it to others. It would be easier to torture me to death and pay the lawsuit than give me proper care and have to say no to others.
For the type of person I am-I’m a trusting, laid back person that likes to help others and learn new things>I try to see the good in anyone and give second chances .  My hobbies, interests are: reading ‘Sci fi, spy or adventure novels, computers, physics, psychology, video games, listening to classical music, classic rock, oldie and r and b music. I like doing kakuro, samuri isudko and cryprogram puzzles. Mostly I’m a big nerd.

Short Description of Ehlers  Danlos syndrome 
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.

People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn't strong enough to hold them.

A more severe form of the disorder, called vascular Ehlers-Danlos syndrome, can cause the walls of your blood vessels, intestines or uterus to rupture. If you have vascular Ehlers-Danlos syndrome, you may want to talk to a genetic counselor before starting a family.
Treatments and drugs

There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.

Medications

Your doctor may prescribe drugs to help you control:

  • Pain. If over-the-counter pain relievers — such as ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) — aren't enough, your doctor may prescribe stronger medications for your joint or muscle pain.
  • Blood pressure. Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low.

Physical therapy

Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations.

Surgical and other procedures

In rare cases, surgery is recommended to repair joints damaged by repeated dislocations. However, your skin and the connective tissue of the affected joint may not heal properly after the surgery.

Click here for More Complete description with different types and common misdiagnoses:  https://ffupstuff.files.wordpress.com/2016/11/joshua-bella-elhler-danlos-classifications.pdf

Joshua Bella's need list , FFUP's letters to authorities
 and some responses 
Joshua Bella Need list

 NEED LIST

I have been in contact with Disability Rights WI. I wrote them the same day as you and they are looking into my problems.Last week HSU has seen me they said my braces arrived months ago-that she saw them in cabinet when I went to Physical therapist her said they are not there so they claim they are reordering them. They also claim a multilevel committee is meeting this week to discuss my health care it was postponed last week. They put me on Meloxilam (anti inflammatory) after I asked but the lowest dose. I asked to get it upped= still waiting. They gave me 2 mattresses but they are so beat up they don’t match the thickness of one and the 2 pillows are the same way. I’ve been asking for replacement for months but get ignored-they say they ordered them. I think they are just stalling for time-they know they are in trouble. I was supposed to go to medium long time ago just waiting on my pending case to get over. Now they constantly give me cellies that are violent, mentally ill and rapist hoping something will happen to get rid of me that way. That’s what’s going on now but these are the things I need and explanation why-I have told WCI and HSU the same things multiple times.
1) Hemorrhoids removed : Self explanatory but I have had these for ten years and they don’t stop bleeding heavily And they might be part of the pseudo seizure attacks.
2) Feed Cell ( breakfast only) My body is very weak in the morning.  I only sleep 3 to 4 hours a night on a good night in 20 some to 30 minute gaps due to pain. I wake up by 4 am and work my legs and arms getting them ready for the day . It takes around 4 hours to get the pain somewhat manageable but usually by 9:20 I can start moving around/prior to that my muscles are too weak and I am in too much pain.
3) no a.m. passes: . As explained in feed cell above, I am a mess in morning and problem is also if I start moving before my body is ready, it over works it, causing horrible pain and extreme weakness and is very dangerous for me and my body will shut down faster. It usually shuts down around 6 pm on a regular day.
4)Medication: The is vague because I am not doctor but I know it’s a lot I’m supposed to be on. There is not standard treatment for this illness-Doctors just don’t know what to do and Are scared> They’re supposed to treat the symptoms which are a lot>I desperately need pain relief>I cannot mentally take it much longer ..
5) mattress-pillows. The DOC has  a blue medical mattress- I saw them at Dodge-.I have been begging for it but they Say it is for para and quadriplegics.  I don’t fit but I need something that forms to my body-not too soft or hard with no built- in pillows-that is horrible on my neck. The pillow –I need a very firm pillow that can support my upper body while I try to rest to prevent my shoulder and him from sliding out of place. And I need also a softer pillow that will conform to my head and neck to take the strain off my neck.
6) ADD treatment: I have horrible ADD –one reason I cannot sleep as my mind won’t turn off and there’s like a million issues I think about. Drives me crazy that people think ADD is just for school but it effects my problem solving ability and how I react to problems which I do is very violent and explosive. It helps me cope (treatment?)and think: I can’t even hold a conversation to read without it> And I don’t have a TV so as you can imagine I’m going insane. I don’t know how I made it this long.
7) Tenz unit. Tenz unit helps great for Muscle help and pain relief. They took mine because my cellie hit me a couple time and broke he wire and it was taken way> security makes people only use it an hour a day>I need ti all day n my whole body so I could use two. But what I have been asking for for years is one installed in my spine-does my whole body at once.
8) Half time at rec> the full rec period is too hard physically on me –if it could go back ½ way (Threw To rest?)it won’t be so hard. When it is over I work my body and it can take a day or two to recover. But I would like to get out of my cell and move around Just laying there is bad and not having a tv just makes it worse.
9)Shoes The state shoes are painful.I have new balance but can’t always wear them –those guys are very bed on my legs and arms.
10) Complacent cellie- I need a cellie that won’t beat me, make me do all the work in room, steal my stuff or god forbid rape me. Which all but last has happened. I cannot defend myself and am too weak to pull my locker out so my stuff ‘s left out.  I’ve told the CO’s how I was being treated and even had a black eye for a week and they do nothing. I need someone who won’t hurt me and is willing to help  me get  around on my weak days> And knows what to do when I have a seizure or fall out Michael Vang 466731 has offered the first shift Sergeant said ;but Captain refused. They are intentionally putting me in dangerous situations> They regularly move others for no reason or Because they don’t get along with cellie.
11) chair. In anger management the chair is so bad I can’t even think after about thirty minutes from pain .If I could get a more ergonomic chair or back pad for support,  it would help.
12) Move to Jackson Prisons. Jackson is the closest prison to Mayo Clinic MN. That s the only place that is doing research on my illness.I’ve asked these people many time to call them for help but they refuse .I hope if I get that close the DR’s form Mayo will be more willing to help. and they have  a computer course I could take as well as ADOA. It’s close to my town so could get visits with mental support,and they keep saying Medium has more slack rules.I’m only here til my pending case is over. There is no security reason to keep me here.
13) research on seizures. The D’s Don’t know what is causing my seizures. I want to find out what they are and stop them. I think they might be tied to my hemorrhoids, since I had them for so long bleeding.

  FFUP's 2nd letter about Joshua to Warden, Director of DOC Health Services, Some legislators etc:



                                    Forum for Understanding Prisons
                                                                   A 501c3 non profit
Brian Foster Warden, WCI
WCI HSU
James Greer, director DOC health Services

                                             RE: Joshua Bella
February 24, 2016
              Hello, I am writing with a follow-up to a letter I wrote last November.  I enclosed the part of that letter that deals with Joshua as the requests are still pertinent and more urgent that ever. Joshua has a genetic disease called Danlos Syndrome type three.-it is incurable and the pain is so bad he cannot sleep. He asks for help in making his days bearable.  All the items listed in the enclosed letter would help tremendously but at present this man’s  main concern is that he is being denied tens and his lidocain pads. He had seen the pain clinic doctor in Madison and these were prescribed. In Joshua’s words:  “And WCI isn’t doing that for me they say I have a tens unit but won’t give it to me and once I would get it, it’s only for an hour twice a day and DOC doesn’t give out lidocain patches I was told. I still don’t have my wrist and shoulder braces they say they ordered but they have been saying that since August 2015and I’ve been asking for replacements since May 2015.  My elbow ones are already wearing out. I told HSU but was ignored……I’ve gotten noticeably weaker. Just walking to the library makes me light headed and exhausted. I’ve explained everything about how my body works and what is needed  to stabilize my health and keep me safe but my pleas for help fall on deaf ears.”

               This is also from his 2-6-16 letter: “I had enough, I can’t take the pain. I can barely function anymore because my mind is overwhelmed with pain all day and when I’m not screaming in my mind my thoughts are racing nonstop so I was going to kill myself. I’ve done everything I possibly could to get my medical my entire day is spent trying to hide my pain. I gave up .I got caught before I could do it…..I was going to cut myself open tonight but I was able to talk with my mom on the phone and she cheered me up some so I can try to wait in hope something changes I just don’t know how long.”

               Please take this man’s plight seriously and get this man his lidocain pads  and tens unit. The days are too long if one has to endure such pain, especially when there is relief prescribed. I do not understand why he is not getting these.. He has a well thought out plan in the November letter also but to implement he needs help. - none of this is out of bounds. Thank you for your attention.

Yours  sincerely, Peg Swan


29631 Wild Rose Drive
Blue River, WI 53518
608-536-3993

Cc: Senator Lena Taylor;Senator Harris Dodd;Joshua Bella;Disability Rights

 Above letter goes on to include 1st letter see all: 

FFUP to authories 2 16:https://ffupstuff.files.wordpress.com/2016/11/j-bella-2-23-16-warden-et-all-plus-11-16letter.pdf
 

/2016/11/j-bella-warden-response-to-letter-3-16-1.pdf


Joshua's letters /docs to HSU and HSU docs certifying care was given 
Joshua Writes HSU://ffupstuff.files.wordpress.com/2016/11/1ajoshua-bello-3-16-hsuall.pdf 

HSU Reports on what they have done:https://ffupstuff.files.wordpress.com/2016/11/1joshua-bella-hsu-report-all5-26.pdf 


And so it goes, with Joshua Bella and many others in there- not neglect, for there is a lot of activity BUT the need is not addressed. FFUP believes the overcrowding in our prisons and serious, dangerous lack of staff has led to much misuse and abuse- and records become the important tool in fending off redress by prisoners- they are done well, but the care is poor, the resources not used because instead they are used to warehouse an inflated population. 
 
latest news:
Joshua still in excruciating pain with a lot of pretend care here is series of requests and responses using health service unit (HSU)slips. His comments on responses are put in text boxes.

Joshua Bella's letter to HSU(Health service unit)
/https://ffupstuff.files.wordpress.com/2016/11/joshua-bella-to-hsu-11-916.pdf
Typed version coming

series of back and forth communications with HSU/
https://ffupstuff.files.wordpress.com/2016/11/j-bella-hsu-1-thru5-all.pdf

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