Tuesday, November 26, 2013

There's Been A Lot Going On.

Well I have had a lot of things going on since my last post. My daughter developed End Stage Kidney Failure as a result from Microscopic Polyangiitis. Which she inherited from me... I found out this week that my arthritis comes from Microscopic Polyangiitis, a year after my daughter was diagnosed. I'm not sure what the next step will be for us. I have a specialist appointment coming up in December. Hopefully they will have some answers or helpful advice at least. My joints are getting worse its in my hands now too. I had to quit my job because it was to difficult to work with the way my joints and feet are full of pain. I had to phone in sick when it rained or was snowing. Somehow that is frowned upon. Hmmm? Wonder why, lol. I keep getting denied disability. Makes things difficult to deal with. I will keep applying though. :)

Here is a definition and symptoms of Microscopic Polyangiitis, copied from http://www.vasculitisfoundation.org/education/forms/microscopic-polyangiitis/ website for those of you who are wondering what that might be. Check out the site for further details if you like.

What is Microscopic Polyangiitis?

Microscopic polyangiitis (MPA) is a small vessel vasculitis which primarily affects the arterioles (small arteries), capillaries and venules (small veins). Since patients with this condition often have a positive blood test known as an antineutrophil cytoplasmic antibody (ANCA), it is also a form of “ANCA-associated vasculitis”. Granulomatosis with polyangiitis (GPA/Wegener’s) is a related condition that shares features with MPA including the presence of ANCA.
The cause of MPA is not known. This condition can affect many organ systems in the body including the skin, nerves, lungs gastrointestinal system, lungs and joints. It is a treatable condition and the goal of therapy is to stop further damage to the organs from inflammation in the blood vessels.

Who gets Microscopic Polyangiitis?

MPA is an uncommon condition. It can occur at any age, but typically affects people in their in the fifth and sixth decades of life.  Men may be affected slightly more than women. It is more commonly observed in Caucasians and is rarer in other ethnic groups.


Since MPA is a systemic disease, it can affect almost any organ system in the body. Therefore, the symptoms depend on the area involved. They can vary from person to person and not all symptoms are present in everyone with the diagnosis. People with MPA often feel sick and unwell.
Symptoms may include:
  • fatigue
  • fever
  • decreased appetite
  • rapid and sudden weight loss
  • “flu-like” symptoms
  • rashes (usually over the legs)
  • muscle aches
  • joint pain
  • cough
  • shortness of breath
  • coughing up blood
  • abdominal pain with food
  • involvement of the nerves with new numbness, tingling or sudden loss of strength with inability to lift your foot (so called “foot drop”) or wrist (“wrist drop”)

Thursday, May 16, 2013

Its been awhile

Its been a few months again. I've been busy. Finally got hired somewhere - Nice place to work.
They are quite helpful and understanding of my situation. My medication effectiveness is seeming to wear off so I will be going in to Doctors to see what they are able to exchange my current medications with. Seems that after being on the same ones for to long they just stop working for me. I went to get some other additional medication when I got hired.

Due to a child becoming seriously ill. It is suspected that what caused my child's illness may have caused my arthritis. So blood work will be done sometime in near future to check it out. Will post when I know results.

Wednesday, August 1, 2012

Comments on the 5th and 6th Edition Helpbook Section 1

 Sorry that it took me until this late in the day to post my comments on the Helpbook, had a really slow day today. By the time this will be posted it will be Aug. 1 2012.

 I still do not know what type of arthritis I have. I booked an appointment, just couldn't get one before today. As I was reading section one I thought that I may come to a little bit of understanding as to what type of Arthritis I have. I wasn't that lucky, all I still know is that it is an inflammatory arthritis. A person would think of Rheumatoid Arthritis right away when they hear inflammatory, but I was told all my tests for Rheumatoid Arthritis were negative.

 One thing this First Section of the book has helped me is understanding what arthritis is and that it doesn't just come with age (I kind of had figured that one out seeing as to I'm young yet). I know there are over 100 different kinds of arthritis but so far not many are listed in the book, I will have to do some other research also to find the names and symptoms of the other types of arthritis that are not listed in section one.

 One thing they do mention a lot for each type of arthritis is exercise. Now I know from experience that exercising when you are in tremendous pain isn't possible or at least a person doesn't have the energy to put themselves through even more pain. On days like that I just do what I need to do and leave the exercises for days when I feel better.
 Weight-bearing exercise is mentioned that it is very, very important in maintaining strong bones. The body reacts to such exercise by increasing the calcium content and thus the strength of the bones. Walking is the best example they say. If at all possible, walk half a mile to a mile (1 to 1.5 km) a day.
 For the longest time I haven't even been able to walk a block in town let alone a half mile. But now I'm in a good spurt again and am able to walk for an hour at a time. I am able to do yard work for a few hours at times also. So it is looking like I will be able to walk half a mile every day soon.
 They do say that if that amount of walking is unrealistic for you, remember that even a little weight-bearing exercise is important. That is where what I have been doing comes in, I started off with the littlest thing and now am able to do a bit more. The book says just to do as much as you can. In my opinion it is better not to over do it. When you over do it then you damage more, according to how I understand my Dr. When he heard how much I was walking in the beginning and how much pain it was causing me. He told me to slow down, don't do as much as that, you don't have to create more pain it just causes more damage.

 Suggestions on developing a walking program are in chapters 10 and 13 in the 5th Edition, and chapters 11 and 14 in the 6th Edition. The book says that recent research has shown that women need to walk 4 miles (6 km) a week to get maximal exercise benefit for osteoporosis prevention. And that includes all the walking people do in their daily lives.

 (Swimming is not weight-bearing exercise.)

 They do say that the most effective exercises seem to be swimming, walking, and bicycling which are easy, can be gradually increased, and are smooth rather than jerky. Now I lost the ability to ride a bicycle when the first really bad spurt of arthritis hit. I am unable to move my legs in a circular motion when strength is required and it is really painful. So I am not sure how I will work this into exercise at the moment, I am going to try riding a bike again on a good day to see if I am able to accomplish the circular motion with weight-bearing again.

 Strengthening exercises, described in Chapter 12 in the 5th Edition, and Chapter 13 in the 6th Edition, can also be of help.
 Exercise should be regular.

 They do mention that drug therapy is just to control the discomfort. Chapter 20 in the 5th Edition, and Chapter 21 in the 6th Edition discuss medicines to reduce pain and inflammation. The reason that you may not be prescribed a pain killer with codeine or other strong pain relievers is because pain is a signal to the body that helps protect a diseased joint; it is important that the signals are received. Details on pain management are in Chapter 15 in the 5th Edition, and Chapter 16 in the 6th Edition.

Hope that this is some encouragement for others as it is to me.
Also to help everyone as it is helping me to keep positive.
Our lifestyles just have to change, what we do for recreation, more then likely has to change also.
It may "feel" like we have lost 20 years off of our lives but, it doesn't mean we have to let it take the 20 years away from us.
It is important to see how extremely important it is to keep moving even though our bodies don't want to.

Friday, July 20, 2012

The Arthritis Helpbook

I mentioned earlier in a post that we would be reading the 6th edition, well I just thought that I would let you all know that if you have the 5th edition that is fine also. I just picked up that book today so I am able to go through that one with everyone also. I will be ready to post on both of those books on July 31st.
Thank You all.

Sometimes I Just Want To Stay In Bed

A few days before it rains I just can't move and want to stay in bed. Well honestly I stay in bed until 1 or 2 pm on those days by then I have mustered the strength to get up and take my medication. This also happens the days that it is cloudy or raining out, though once it is raining I seem to feel a little better. It really affects my life, not sure how I'm going to get active again. I just can't do what some people do. I guess to some degree I do. Because when I see something has to be done no matter how I feel I go do it. Some times with tears running down my face because it hurts so bad, which of course usually is followed by anger. Once the anger hits then I get more strength guess it numbs the pain to some degree. Yesterday I was mowing my lawn and I'm sure passersby thought I was nuts, lol, with the tears, the swearing, the pouting, and the angry face. I sure must of been a frightful sight. But I had to, my kids have been sick most of the summer so far and the grass was tall so what else was I gonna do? I could barely pull or push the darn thing, and besides that I could barely move my legs, and to top that cake nicely off I had to keep starting it (someone came to the door, I ran over edging and the thing stalled on me) Ugh! Just thinking of it upsets me, lol. And while I'm in this here lovely mood I hate yawning also because my jaw hurts so bad when I do! I try and go to sleep before I start yawning but with a family, that doesn't always happen because you want to be there for them too. If anybody has had lock jaw they might know what it feels like, I've been told that's how it feels when you have that. I've never had lock jaw so I wouldn't have a clue.