msdavis760’s BodyBlog

my real dad was in a race car accident last sat aug 8. he flipped the car several times it was a violent crash and he had to be cut out of the car. he’s in the icu at brooke army medical center in san antonio. I flew there on sunday to see him and let him know I do love him. he was awake and alert. he’s currently paralyzed from the chest down. no feeling in arms and a little tingling in his legs and right foot. they had to do a tracheotomy and put him on a ventilator on wed and put a feeding tube in his stomach. when they put in the feeding tube they accidently cut his spleen and had to remove it… his back is broken at T8 and T9 and he broke one shoulder and dislocated the other. his spinal cord is very bruised. its too soon to know if the paralasis is permanent. I’m very scared for him and it was so hard to see him like that. I had to see my stepdad like that, I saw hals dad like that too.. all I can do is pray and hope my dad recovers. sooooo over being stressed out constantly! somethings gotta give soon lol

no changes in meds, no less pain yet, kidney ultrasound scheduled for next month.. so hating prednisone cuz it makes my body not able to heal well so a tiny scratch has turned into weeks of infected wounds… its hideous and scary.. still trying to workout when i can.. someday it has to get better..just holdin onto hope. tomorrow we will bury my fiance’s dad both our dads gone…hurts but makes me appreciate love and family and life so much more

saw the rheumatologist last week, inflammation levels still high. my hands and finger joints hurt constantly and are so tender i cant carry anything, press down on my my hands or fingers hard or lift weights. the rest of my joints always ache or throb and everhthing falls asleep and swells at night. steroid dosage got left the same at 15mg, got a new med called meloxicam to help pain and inflammation in arthritic symptoms. they found microscopic hemoturia in my urine (blood in my urine that i cant see) going in thurs for further testing. havent gained any weight, i refuse to become a victim of prednisone..lots of cardio, yoga and body weight exercises as much as i can. miss lifting weights, miss not being in pain and still sick of taking meds. my fiance’s dad died on monday so this week i did massive cardio to get my stress, sadness and anger out, if my hands didnt hurt i woulda laid into the punching bag but i took it out on the stair master. im very sad for my fiance, im sad because it brings up all my feelings of losing my dad a yr and a half ago and im just sad because i feel what my fiance feels. i hurt when he hurts and especially with this, i know how much it hurts to lose a parent… life sure has been testing me lately and right now im happy to be alive and im remembering to enjoy life because its too short and in the end what matters is that i had a fun happy life and really enjoyed it. so im just pushing forward everyday, laugh at myself, laugh at my weird autoimmune disease and how its rare and i wouldnt expect anything different cuz im rare.. i gotta laugh when i cant open bottles or when it takes me an hour to deswell and get out of bed… **** it..the pain is tolerable at this point and im enjoying the stairmaster and sweatin my ass off on it everyday with my trusty ipod.. i will overcome it all eventually, im a fighter, always have been always will be.. gonna enjoy every moment of life and thank god for blessing me with a once in a lifetime love of my life soulmate kind of love. i am complete. i love you hal, together we will overcome the death of your father just like we overcame the death of my father and we as a couple are a million times stronger now than we were when my dad died. we were only dating for 5 weeks then and look at how strong we were and here we are 2 years later stronger than ever. our bond cannot be broken so take my hand and trust in us and someday you will think of your dad and smile instead of cry… when i think of my dad i think of how strong and brave and incredible he was and how lucky you were if you were his friend or family. we really were in the presence of an angel and we still are we just cant see him anymore.. soRIP Mr Gray, find my dad and together you guys can look after us and be there when hal and i get married. im sorry i never got to meet you on this earth mr gray but i know you have peace in knowing how much i love your son and how i give him my heart and soul til death do us part… god comfort hal and give us the strength to get through…

well im still on prednisone to control the inflammation in my body and i hate it. prednisone works amazingly but the side effects are horrific. my blood pressure has gone from 90/60 to 125/75 which is still normal but not for me. it also makes me hot all the time which makes me feel like shit even more, it dries out my mouth, the inside of my nose, makes me retain water and not to mention that it shuts off my adrenal glands which is why i have to taper off slowly to allow my adrenal gland to grow back to normal size and start producing the hormones i need otherwise i can go into adrenal failure which can cause another set of diseases… i hate having to take so much medicine and i hate that i have no choice, i feel like i have no control of my body anymore. my joints hurt constantly, i have scar tissue in most my joints especially my hands now from the inflammation and damage caused before i was on the steroid so im in pain. hal and i started doing yoga which i missed for 2 months but it hurts my hands so bad and then ive started trying to lift again but very lightly and even if my muscles are strong i cant use heavy dumbbells because ive lost so much grip strength, it hurts to grip anything actually. im doing lots of cardio which even that hurts my damn knees and feet and toe joints. my life is weight lifting, its also my job and i cant even lift the way i want. im so ****ing frustrated. i wonder why did my body suddenly turn on me and attack me? maybe it was from all the stress and grieving from the last year and a half that lowered my immune system and this just happened.. but now im stuck with a rare chronic disease that has no cure… people lose their loved ones all the time and hurt as much as i hurt and they dont develop weird diseases.. so why me? i know theres a lesson to be learned a reason for everything, even this i just dont know what it is yet. im having a hard time accepting this and im fighting myself constantly about taking my meds or not.. i guess it will just take time for me to accept and change my life accordingly. i dont want to rely on medicine for the rest of my life but i think im going to have no choice just gotta keep pushing for now…

i saw my holistic (alternative chinese medicine) doctor tamara, today. shes amazing! she took a look at my bloodwork and saw the levels of inflammation and saw my white blood cell count was high and my red blood cell was non existent and saw what a regular dr wouldnt look at.. my protein and calcium levels were completely depleted which is normal because of the damage done in my joints and muscles from the stills disease and my body attacking itself. so shes got me on major protein and calcium supplements and also something for my adrenal glands which are shot from dealing with the massive pain ive been in. i feel extremely hopeful and confident that this can help put my stills disease into remission and stop the long term damage being done to my joints and muscles and organs. hopefully i can come off the steroid drugs soon too! the rheumatologists next step for me would be to put me through chemo to shut my immune system down because its attacking my body, chemo? are you kidding, that would kill me, i saw what it did to my stepdad. so im looking at 15plus pills a day and more protein but ill give it a shot and see. i see the rheumatologist again in 2 weeks… im still in a lot of pain and i want to feel good again!

so in the last 6 weeks or so since the onset of this whole stills disease ive only been able to start working out slowly this last week. i did 20 minutes on a stationary bike 4 days last week, some ab work and stretching and then some swimming. my joints hurt all over no matter what i do, ive lost the ability to use my freakin hands for anything, opening water bottles, other shit.. lost my grip strength for now..maybe i can get it back. i get  high fevers several times a day which is part of stills and im completely exhausted and stiff all over. its horrible to go from powerlifting and being a trainer and being able to do anything workout wise but ill get back. gotta get my meds figured out, gotta get this inflammation out of my joints and my lungs and heart. gonna see the rheumatologist at the end of the month, on a waiting list to see a hollistic dr as well, gonna try anything i can… gonna get back to being strong.

so here it is peeps i have something called Stills Disease. heres some info off the website for stills.

Information About Still’s Disease

What is Still’s Disease?

Still’s Disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash (view pictures of the Still’s rash). Still’s disease was first described in children, but it is now known to occur, much less commonly, in adults (in whom it is referred to as adult-onset Still’s disease).

What causes Still’s Disease?

There have been a number of schools of thought. One is that Still’s disease is due to infection with a microbe. Another concept is that Still’s disease is a hypersensitive or autoimmune disorder. In truth, the cause of Still’s disease is still not known.

How does Still’s Disease fit in with juvenile rheumatoid arthritis?

Still’s disease is one type of juvenile rheumatoid arthritis (JRA) and is also known as systemic-onset JRA. By “systemic” it is meant that along with joint inflammation it typically begins with symptoms and signs of systemic (body wide) illness, such as high fevers, gland swelling, and internal organ involvement. Still’s disease is named after the English physician Sir George F. Still (1861-1941).

What are symptoms and signs of Still’s Disease?

Patients with Still’s Disease usually present with systemic (body wide) symptoms. Extreme fatigue can accompany waves of high fevers that rise to 104 degrees F (41 degrees C) or even higher and rapidly return to normal levels or below. A faint salmon-colored skin rash characteristically comes and goes and usually does not itch (picture of the Still’s rash). There is commonly swelling of the lymph glands, enlargement of the spleen and liver, and sore throat. Some patients develop inflammation of the lungs (pleuritis) or around the heart (pericarditis) with occasional fluid accumulation around the lungs (pleural effusion) or heart (pericardial effusion). Although the arthritis may initially be overlooked because of the impressive nature of the systemic symptoms, everyone with Still’s Disease eventually develops joint pain and swelling. This usually involves many joints (polyarticular arthritis). Any joint can be affected, although there are preferential patterns of joint involvement in Still’s Disease.

How is Still’s disease diagnosed?

Still’s disease is diagnosed purely on the basis of the typical clinical features of the illness. Persistent arthritis (arthritis lasting at least 6 weeks) is required to make a firm diagnosis of Still’s disease. Other diseases (especially infections, cancers, and other types of arthritis) are excluded. Many patients with Still’s Disease develop markedly elevated white blood cell counts, as if they have a serious infection but none is found. Low red blood counts (anemia) and elevated blood tests for inflammation (such as sedimentation rates) are common. However, the classic blood tests for rheumatoid arthritis (rheumatoid factor) and systemic lupus erythematosus (antinuclear antibodies, ANA) are usually negative.

What is the frequency of Still’s disease and its features?

Still’s Disease accounts for 10-20% of all cases of JRA. It affects about 25-50,000 children in the United States. It is rare in adults, a majority of whom are between 20 and 35 years of age at onset of symptoms. Of all patients with Still’s Disease, 100% have high intermittent fever; 100% have joint inflammation and pain, muscle pain with fevers, and develop persistent chronic arthritis. Ninety-five percent (95%) have the faint salmon-colored skin rash. Eighty-five percent (85%) have swelling of the lymph glands or enlargement of the spleen and liver; and 85% have a marked increase in the white blood cell count. Sixty percent (60%) have inflammation of the lungs (pleuritis) or around the heart (pericarditis). Forty percent (40%) have severe anemia. And twenty percent (20%) have abdominal pain.

What research is being done on Still’s disease?

Diverse types of research are ongoing related to this illness. At one of the latest meetings of the American College of Rheumatology, for example, a paper was presented which demonstrated the effectiveness of intravenous immunoglobulin therapy in adult-onset Still’s Disease. This was a pilot study. More studies are needed to confirm these results.
Also see our page on Still’s Research for research abstracts and journal articles.

What is the outlook with Still’s Disease?

The fever and other systemic features tend to run their course within several months. The arthritis can be a long-term problem. It usually stays on after the systemic features have gone. The arthritis can then become chronic and persist into adulthood. There is 4 types of patterns that Still’s Disease may take in any patient and I will attempt to describe them here as best as I can:

How is Still’s disease treated?

Still’s Disease can cause serious damage to the joints, particularly the wrists. It can also impair the function of the heart and lungs. Treatment of Still’s Disease is directed toward the individual areas of inflammation. Many symptoms are often controlled with antiinflammatory drugs, such as aspirin or other non-steroid drugs (NSAIDs). Cortisone medications (steroids), such as prednisone, are used to treat more severe features of illness. For patients with persistent illness, medications that affect the inflammatory aspects of the immune system are used. Medications now being used are analogous to the classic “second-line” therapies used for patients with rheumatoid arthritis. These include gold, hydroxychloroquine (PLAQUENIL), penicillamine, azathioprine (IMURAN), methotrexate(RHEUMATREX), and cyclophosphamide. There is a new class of drugs called biologics that are very promising in treating stills. Enbrel, Remicade, Kineret and several others are available and are being used as a first line therapy in treating stills, meaning you dont have to take methotrexate and fail before you can move on to one of the biologics. Most of the research however shows that when mtx is given along with enbrel or remicade that the outcome is much better than with either one alone.
You can find more info on these medications in our Treatments for Still’s meds section and the Still’s Research section.

Patient and Family Education

Patients and their families should be provided with the necessary information to enable them to have a complete understanding of the disease and its effects on their life. Stills Disease may manifest itself mostly as joint symptoms, especially early in the course of the disease. It is essential that patients with Stills and their families understand that the disease is systemic and may involve many areas of the body.
Patients and their families should understand that the disease is often cyclic in nature, and that they should expect “good” and “bad” days. Further, they should understand that their actions on any given day can cause a “flare” or exacerbation of the disease (that is, a “bad” day). While a patient may never be able to completely stop a bad day, frequently a patient can manage her or his life to reduce the number of bad days.
Central to controlling bad days is planning activities and rest periods. Patients and their families must understand the need for planning virtually every activity of their lives. This is necessary because a patient with this disease can cause a flare by over-working or by increasing physical or emotional stress. Rest is important for the patient with Stills and cannot be overemphasized.
Planning by the patient with Stills should be done on a yearly, monthly, weekly, and daily basis. For example, if the patient is considering a vacation, the dates should be marked on a calendar well in advance so there is ample time to pack and otherwise prepare for the trip. Patients who prepare immediately before the trip may be too fatigued and sore to enjoy the trip, and may initiate a flare. Similarly, weeks should be planned so that there are rest days interspersed with work days. And even the hours of the day should be planned so that after a period of physical activity, a period of rest follows.
Planning should also incorporate changes in body position. Patients should be encouraged to change their position frequently during the course of the day. Ideally, position changes should occur at least every two hours. The patient with Stills who sits most of the day should periodically get up and walk around. The patient who stands most of the day, should find some way to periodically sit and rest. It should be acknowledged by all involved that at some point changes in life style may need to be made.
 
so yes i feel like shit now and im on meds for who knows how long but i hope to be able to live a normal life with this. im sad right now but i just gotta process this and ill be okay.. thanks for everyones support especially hal who has to take a lot of shit from me when im in pain and sick, im sorry baby i love you thank you for standing by me and helping me. and thanks to my mom too cuz i know shes worried and feels bad but ill be okay..

yay its my bday (may 9) and im  now 25! i have a crazy fun weekend planned.. been working out like crazy, getting strong again back into cardio and feeling physically good. my bday makes me miss my stepdad even more, my first bday without him hes in my heart though and im going to visit the cemetary in the morning to say hi

have a great weekend everyone! happy bday to me!

well honestly im still really struggling with my stepdads death.. i dont know if im still grieving or if its turned into depression but im exhausted and still sad but not sad all the time.. i just think about him all the time and i think about watching him die and his funeral and all our memories and all the stuff hes missing out on in my life and it makes me cry.. i still have nightmares and a hard time remembering to eat but im trying.. im back to work full time and my boyfriend and i have been working out together which really really motivates me and helps him learn new stuff and better techniques.. i guess after dating a trainer for 6 months and seeing my clients progress and now that ive lost soo much strength he finally saw that he should be working out with me lol so im sore all over of course and i feel like im lifting like a girl lol but im trying.. i ran 2 miles today and it hurt like hell but i did it.. my lungs suck after not doing cardio for so long and having surgery (ps my throat still hurts) and having pneoumia after surgery lol man i was a mess.. but im tryin to stay strong mentally so i can physically get strong again and feel good about myself… i just gotta do it for my dad at this point.. i know hes lookin down at me..

so im sore everywhere, seriously everywhere lol… i just got the funeral pics developed today from last month because my bf had the camera and then forgot to pick them up for like 2 weeks so seeing the pics set me off into a crying mess.. i guess it just takes time..more time… sigh