MYOSITIS WORLD

Map of Where We Are in This World

2007-09-13T10:54:00.000-05:00

The Myositis Association

2007-09-13T10:47:00.000-05:00

The Myositis Association: http://myositis.org/
This is a fantastic information and support site that anyone that has Myositis or wants to know more about our disease must visit. I can not tell you how much this site and the message boards there helped me when I first learned I had Dermatomyositis and it continues to do so today. It is a site I visit several times a day.

The people on the message boards are like family. We each live with the disease and the problems it brings us each day. A section is provided for JDM, IBM, DM/PM and General. You can ask them ANY thing and you will get a real life answer.

You do not have to join the TMA to view their information or to particpate in their message boards, but joining the TMA is inexpensive and will provide you with even further resources as a patient. Most of the money on a full membership goes to research. For me the highlight of joining was that I recieved accesss to a list of others with the disease in my general location. Each area has a Keep in Touch (KIT) leader that host get togethers. I finally wasn't all by myself with this disease!

There is so much information...too much to list here. You just must check them out!

Partial List of Quick Facts about TMA:

Interacts with nearly 20,000 myositis patients and their families and friends.

Hosts a highly visible website that has more than 320,000 hits annually.

Acts as the forum for consensus and partnering among myositis researchers worldwide.
Provides nearly 5,000 physicians with patient information materials and referral materials.

Presents the latest news on myositis treatments, research and coping skills by way of its Annual Conference, bringing together more than 300 patients, families and experts to learn from specialists and meet with people who share common concerns.

Offers 65 support groups in the U.S. and overseas for patients and their caregivers to exchange information and share experiences about coping with myositis.

The Mall

2007-08-15T12:10:00.000-05:00

I went to the Mall by myself for the first time in about 18 months last week! Ed needed a replacement jacket from Penney's in the men's department. I was able to find a parking spot right in front and walked all the way to the up escalator without any problems. I did get a little tired and had to stop and drool on the jewelry counter for a moment. I got the jacket and got back down the escalator and was looking forward to walking out into the mall area and sitting on the wooden park benches. To my surprise they had all been changed to lovely, cushy, sink into me couches and chairs-----which I can get in, but not out of!! Luckily I found a Starbucks with hard back kitchen chairs! The chairs enable me to rest so much that I was able to walk down to Macy's, but I found that I had to rest at the makeup counter in one of their high chairs. The ladies there were very attentive and I did manage the strength to pick out a few necessities of life before returning back up the hall via a shoe store! It was great to be able to do that, even if it did exhaust me...oh yes, I was walking, with NO cane!!

I have continued to wean down on my Myositis medicnes and now only take one Imuran a day until my next Rheumy visit. I do believe I am better, but I still hurt. The fatigue is terrible. I am not the way I use to be. But this is so much better than last fall!!

Remission? Maybe....

2007-07-21T21:22:00.000-05:00

Finally a few answers. My brain MRI was normal and my CPK blood work was within normal limits also. My Rheumy actually thinks I may be in a remission and has starting cutting down on my meds. Now that is some wonderful news. I have had such an up and down emotional week that I really needed some good news. Sure wish I felt like I was in a remission. I am just so tired, and I hurt, but I believe a lot of it may be the Fibromayalgia. I am so blessed to have had everyone praying for me and I know that it is working. Thanks everyone!

A Dreary Day Here

2007-07-10T08:45:00.000-05:00

I knew it was going to be a bad one. We came in home about midnight last night and under the heavy cloudy skies I could see that.............the neighbors had cut their grass!!! TWO DAYS EARLY! And now even more rain is in the forcast. We look like the hillbillies of the neighborhood. I guess it could be worse.

Still no word on my brain MRI, nor my CK bloodwork. I try not to think of it, but with the diagnostic mamogram looming over me as "Thursday's " event, I can't keep from worrying some. My body has failed me and I'm more than a little upset with it.

Bright side is that Thursday will also be "Grandkids" day. I know it will be a very special one this time and I really look forward to it.

Jackie K in MO
http://www.myspace.com/myositisworld

Myositis Blaahs

2007-06-15T16:56:00.000-05:00

I attended the Kansas City Mini Convention that Harley Russell, KIT leader for Nebraska, Kansas, and Western Missouri, worked so hard to put on for all of us. It truly was wonderful and I would hope that everyone try their best to attend any support group meeting that you can. You would not believe the feeling of true kinship that comes over you when you enter the room!

I think I used all my energy tokens up to attend the convention as I have not been feeling my best since my return. My daughter came in to spend a few days with me and with a lot of help from her, I have created a page on MySpace.com. The new page also has the Map Of Where We Are In This World, but also contains so much more information.

For my dear friend Fay, my daughter made a countdown calendar to Myositis Day. I have started my promised list of doctors that treat Myositis. And when I finish this Blog entry I hope to start on the Remembrance Page. Please, if anyone has a doctor or someone they want added to the Remembrance Page send me all the details so I can do this.

The URL for Myositis World on MySpace is: http://www.myspace.com/myositisworld I hope you will join myspace and leave me a comment. Make sure you're on the map!!

I had been asked to become the leader for The Myositis Association for Southern Illinois and the rest of Missouri. After attending Harley's meeting there was no way that I could not say yes. I hope to be able to plan a get together for our KIT group in the near future.

Map Pin Monster Amongst Us

2007-06-05T22:49:00.000-05:00

There appears to be a Map Pin Monster living on Flapper that has acquired the taste of Myositis pins. If you can't find your pin you may have to register again. Sorry.

If for some reason your request to be put on the map has been rejected, please resubmit with more information. I at least need your name or nic; email address; city/state/prov/country where you live. It is also nice if you say which disease you have and use the colored squares.

The map is really coming along. I feel really lonesome in Missouri, but look way up there in Alaska at Robin. Then move all the way over to Hong Kong and you'll see poor Josette all alone. Explore.

I Love The Map!

2007-06-04T00:22:00.000-05:00

I think I love my map. I am overwhelmed with the response that I have had in a little over 24 hours!! Hoping everyone is as awed as I am.

I recently joined The Myositis Association (http://www.myositis.org) and I was assigned to my KIT group. I cried when I looked at the list, literally bawled like a baby. Only 33 names were on the list and 13 of them lived in Nebraska, so, so far away from me. It really hit me for the first time how rare Myositis is. I contacted TMA and they so kindly let me be on the Southern IL, and rest of Missouri KIT group too. ONLY 11 is in this group, and they don't even have a leader!!! I am thinking about stepping up to be a leader.

If the map gets to be too crowded I will have to make 4 maps, one for each type of the disease. And if those maps get to populated, we will break us down to different regions of the world. I just want us to "see" each other, and know we are not alone.

If anyone wants to link that's fine, please let me know.

I would like for everyone to at least put their first name or nickname and their type of myositis on the map. All you will need to do to add this, is click on your place on the map and your profile will come up and you can edit it. If you have problems just email me. If anyone has a picture that you would like to put on and haven't been able too, you can email me at:

MyositisWorld@gmail.com.

or mail it to me at:

Jackie K
Myositis World
P. O. Box 4111
Waynesville, MO 65583

and I will return it to you.

Future plans for this site include having a page listing doctors that we have used that has a knowledge of our disease that may help those looking for help easier. If you would like share that information now, please feel free to email me. I would like to also add a Remembrance page for those with Myositis that have passed.

Thanks to everyone!! Please subscribe to my blog!!

Double click on the gray bar below the map and it will bring it up bigger. Click on the orange button to join and put yourself on the map. Please put your name or nic;email; city, state; and indicate what kind of Myositis that you have! If you got rejected try and with more information or email me. I'm still learning on how to do this!!

2006-09-10T23:39:00.000-05:00

Where is everyone with this disease called Myositis? I feel so alone sometimes. I participate, no mainly lurk at a wonderful message board at the TMA site, but even then it's only a few people and they may not have what I have. Even if they do, it seems like we all react different to our disease and medicines. We seem to drift between flares, IVG's and medicine weaning up and down. We all seem to have pain and we are all so tired. My arms tire so easy from typing.

I say I have "Energy Tokens" . I hope to wake up with a certain amount everyday, but that isn't always the case. It takes so many tokens just to get out of bed, shower and dressed. If tokens are lacking, I may not stray far from the bed, forget the shower! Sometimes that is as far as my day goes. There has been days of laying in bed, not even turning the TV on. Too many lost days.

Other days I may have extras and I use them to get dressed up enough to be seen in public. Seems like you will always run into some jerk that says, "You don't look sick". I can tell they are looking at my fat body and thinking I am just overeating or not exercising is why a look like a Pred freak. It would take up too many energy tokens to explain so I move on.

On line people are searching for answers, doctors, and sometimes just shoulders. Shoulders we all have. How can we truly give comfort over the Internet? We can tell our fellow sufferers what happened to us and what medicine worked for a while. How long the latest flare lasted. Some come back and tell us they have been in remission. Some never come back. I often wonder if they are in remission; was the diagnoses incorrect, did they die? I would hate to die and people not know it. We all want to be remembered.

I ramble, but I want people to know I am here.

My Letter

2006-05-31T11:07:00.000-05:00

I haven’t really been keeping it totally a secret from you, but I have not been giving you the full complete truth on everything going on with me health wise. So many things going on, and I just didn’t think the time was right till now to share it with you.

I had my yearly medical exam in September as always. I told him I didn’t feel well. He added some extra blood lab work and a chest x ray, but all came back good.

I wasn’t feeling well during the holidays and made an appointment for 19 Jan with my regular doctor again. He referred me to a wonderful rheumatologist where I was diagnosed with Fibromyalgia 31 January, 2006. They still have this as one of the diagnosis.

I kept plugging a long the best I could, but still feeling ill all the time. I had my colonoscopy done on 10 Feb and as you know it came back good this time. On March 8 I had my GYN check up, which came in good. On April 3 I had my mammagram done.

I was getting worse by the day. I was having problems moving my feet to drive, getting in and out of the shower, turning in bed and couldn’t get socks on. The rash started getting much worse and looking really bad. I knew I had to get back to my rheumatologist fast. He seen me (and Ed by this time, can’t hide much from him now that I couldn’t drive or dress myself!) on 26 April. The exam was very frustrating and really showed me how bad I was. Blood work was like donating a pint! Not a good experience for me.

Then the radiologist from the breast center called and they had found a very slight spot at the very edge of my right side mammogram and could I come in for an ultra sound. I did, the very next day. If I had had the mammogram in November when it was first scheduled it may not have showed up. I had postponed my appointment because of having to hold my arms up on the bars because of the shoulder surgeries. They thought they found an enlarged lymph node deep behind the right breast in muscle about an inch in size. I was referred to a surgeon.

The next day I also had an appointment with my dermatologist and she took the two skin biopsies, one from my hand one from my upper arm. They did come back skin inflammation. Things were starting to move fast.

Lab work from my doctor's office taken on 26 April did not come back so well. One thing that was checked was what you call a CPK (or CP) blood enzyme test. Normal CPK levels are around 50-254 and can run significantly higher when Myositis is active (which means something going on with muscles). My first test was 6,327. I was truly sick and things started moving in a whirlwind, but I still didn’t have a definite answer to what was wrong.

On May 1, I was put in the hospital (out patient) and they did a deep muscle biopsy on the upper part of my right leg. The biopsy had to be flown to St. Louis and it took what seem for ever to get it back. It was the one true test that when put with all the others would give me a name to what was wrong with me.

On May 2, I was tested by neurology. He ran a EMB test. First they ran electric shock through my left foot, up through my right hip. Then they stuck with me needles to measure blood flow and nerve damage. Knowing they were going to do it wasn’t fun, but I was so sick and have so much muscle damage that from the knee up I didn’t feel much. They decided they wasn’t any use in checking any further up my body. Good thing out of this was that he didn’t find any nerve damage in my left leg.

I was started on the dreaded Predisone at really high levels and a muscle relaxer to try and help relieve some of the pain and give my muscles a break.

Then on May 11, I was put back in the hospital (out patient) for removal of the enlarged lymph node. I had had a CT scan in the meantime and they had checked from stomach to neck to see if they could find anything else, they didn’t. But now the mass was growing and had turned into two. The surgeon removed one the size of a 50 cent piece and another the size of a quarter. They were stacked on top of each other. The biopsy came back on May 16 and it was NOT cancer. It is a super cell growth called hyperplasia. They did the surgery under my right arm pit. It has healed well.

My CPK levels had dropped to 5,200, but they had to reduce all my medicine down because you don’t heal with them when having surgeries done. The doses are high again and I only have one of the skin biopsies that hasn’t healed well yet.

I have been having trouble getting all my medicine down and they scheduled a modified barium swallow test. It clearly showed pills sticking, but that everything else was working okay. They were able to teach me some techniques to try to swallow them better, and so far it is working rather well. I do not want an endoscope at this time, because I’ve been put out too much for surgeries.

On May 18, my doctor was able to give me a name to my disease. Dermatomyositis . Derma because of the skin problems, although they have greatly improved and Myo because of the muscle, itis for inflammation. I think it is just easier to say Myositis. There are four different types of the disease. I could be a whole lot worse off.

My muscles are attacking their selves. Right now my problems are on both legs from knee to hip. Both arms from elbow up through shoulders. My lower right arm has a few problems, but it isn’t real bad. I do have a problem with my right leg from the deep muscle biopsy. My leg is numb from a little below the knee to 2/3 ways up toward the hip, but this could improve. It is very difficult rolling over in bed at times and getting up from sitting positions at times. Ed is there to help me at every turn.

Since all the test are back in I am on very high doses of some very strong medicines:

1. Prednisone 20 MG 3 X day

2. Methotrexate 20 MG 1 X week (it is a cancer drug, but they have found it may help me with my disease) -it is a disease-modifying drug.

3. Hydroxychloroquine (Plaquenil) . 200 MB 2 X day. It is called a disease-modifying drug. It was first developed for the treatment of Malaria.

4. Skelaxin 800 MG 4-6 times a day. It is a strong muscle relaxer.

6. And various skin creams for the rashes.

My doctors goal is to get me into a remission and try and salvage as much muscle as we can. I’m in a catch 22 right now, because if I try to use my muscles too much, it makes it worse. That is why you will see me move very little and depend on a cane and wheelchair when I feel it is necessary, which is pretty well any where out of my home.

There is no way to tell how long it will take to get me into a remission. When we think we may be there he will start reducing the Prednisone. If a flare up doesn’t result that would be a very good sign! He has told Ed and I that this may be a long drawn out affair. When I get into a remission then I will be able to start exercising my muscles again. If I would do that now it would simply make them worse.

They have completely shut down my immune system to keep the muscles from killing each other the best they can. Down side there is that I could catch anything and everything. So I’m not out much and using hand sanitizers a lot! We have face mask bought up to use if needed.

Ed is taking super good care of me and I am positive things will get better!

I go back to the doctor on Taylor’s birthday, 8 June. I am sure there will be the brutal exam and blood work! The blood work takes a day or so to get it back, but I’ll keep you posted now.

I also wanted to let you know that my son's Sarcoidosis, although another rare auto immune disease is not in the same class as what I have. My doctor says there are 128 rare auto immune diseases. (and if anyone asks AIDS is not a rare one!! Ha).

Love,

Jackie