Wow! This year has gone by quickly!

Hi everyone
I know it has been quite some time since I last posted but I have been busy working on my dissertation...Chapters 1, 2 and 3 are done. Well they are just in the revision stages! Long story but My committee chair took a new position at a new university up north and we were given a new committee chair. She is one of my favorite professors ever! But she has a different style of writing preferences so as stated...revisions!
RA update!
Still on methotrexate and now they want me to begin Humira again! Ugh! Still taking sulfursalazine and Vitamin D which apparently I am always deficient in every time I take a blood test! Still struggling with weight!

My dad is 3/4 complete with his Radiation treatments.
My aunt Yvette passed away on July 6, 2011
My aunt Josie is still in the fight with her cancer

It's been a long year! But God is good!
so until next time I will pray for you and please pray for me!

Great Week!

So this week I decided that Zumba was just not enough for me 3x's per week to assist with the weight issue.

This week I've decided to drop my caloric intake to 1200 calories per day and I am walking 3 miles, 4 times per week. That's right! 12 miles this week!

My knees are stiff today but while I am walking I feel great!
Isaiah has walked 9 of those miles with me and I am greatful for him keeping me company. You would think that my girls would jump at the chance of being able to "exercise" with their mom but....we all know that will never happen!
That is just too much for me to ask! Whatever! That is a completely different BLOG in itself!

Started the sulfur salazine this week. Taking one 500mg in the morning and one at night! then next week 1000mg in the am and 500mg at night. then the following week I get to have 1000mg in the morning and 1000mg at night. Whoo-hoo!
Party over here!

It makes me very queezy but I get through it! Still sticking to the 1200 calories per day!
Thank you Lean Cuisine for making this very easy for me!
Well tonight is Zumba so I will not be walking and tomorrow morning is also Zumba so if you would like to come and hang out I will be there!

Until next time, keep praying for me and I will pray for you!
God bless!

Another Dr's Appt

Okay here we go!
Seriously, can I ever get the same doctor? The VA hospital has so many interns that I feel like I should carry a video with me
each time that I go because I see a new intern each time and have to explain everything over and over again!
It is such a pain in the backside!
Then when you tell them your concerns about weight gain and/or weight loss does anyone ever listen? Why do they ask you
if you have concerns if they are not going to listen to you! Because telling me that maybe I don't know how to count calories correctly or that maybe I'm not aware of my metabolism slowing down because of age? Really!
So first they tell me I'm stupid and now they are calling me old! HELLO!
Argh!
Are they waiting for me to lose my mind and begin complaining about depression!

Now they want to increase my methotrexate from .7 to 2.o and add Sulfur-Salazine
(SEE BELOW)


Sulphasalazine and lung toxicity. S.D. Parry, C. Barbatzas, E.T. Peel, J.R. Barton.
#ERS Journals Ltd 2002.

ABSTRACT: Sulphasalazine prescribing is on the increase. Pulmonary toxicity and
blood dyscrasias are rare side-effects. Numerous case reports have been published
implicating sulphasalazine in pulmonary toxicity. The authors searched the literature
for cases of sulphasalazine induced lung toxicity and the 50 cases identified are
discussed here.
All published case reports/letters referring to sulphasalazine and lung toxicity were
studied. The search terms "sulphasalazine" and "sulfasalazine" were combined with the
terms "lung", "pulmonary disease", "pneumonitis" and "pleuritis" using Medline and
PubMed databases.
Typical presentation of sulphasalazine-induced lung disease was with new onset
dyspnoea and infiltrates on chest radiography. Common symptoms were cough and
fever. Crepitations on auscultation and peripheral eosinophilia were noted in half of the
cases. Sputum production, allergy history, rash, chest pain and weight loss were
inconsistent findings. Pulmonary pathology was variable, the commonest being
eosinophilic pneumonia with peripheral eosinophilia and interstitial inflammation with
or without fibrosis. Fatal reports were infrequent. Most patients were managed by drug
withdrawal with 40% prescribed corticosteroids.
In conclusion, sulphasalazine lung disease should be distinguished from interstitial
lung disease due to underlying primary disease. Despite the increase in sulphasalazine
prescribing, pulmonary toxicity remains rare. The majority of patients with suspected
sulphasalazine-induced lung disease improved within weeks of drug withdrawal and the
need for corticosteroids is debatable.

That is what it is! So Going from bad to worse! I'm going to be taking 2000 mg per day!
Really! How does this show that they heard me when I said any issue about weight.
This is just giving me more crap to take!

So until next time, pray for me and I will continue to pray for you!

School is almost done! Two more days....

YEAH!

Wednesday Woes!

It is only Wednesday! Two days after the methrotrexate shots and my knees have been killing me....not to mention my hands are feeling as if somone has taken tiny nails and placed them into my joints as they continue to move those nails around.
Sad thing is its not just in the mornings it happens at night when you are trying to go to bed. UGH!
On the other hand...Zumba is going great!
I love being energized and being able to move to the music!
Don't get me wrong, I'm exhausted and extremely ready to soak in a hot bath afterwards but it helps you keep your joints active and moving!
Don't you wish there were tiny little elves that could massage your joints on command!
Wouldn't that be great?
So Summer is coming and soon it will be time to put on that bathing suit! Yeah Right! Like that will happen
Let's go back to my favorite subject! Weight! What the heck is going on with not being able to lose weight?
Really! Doing Zumba 3xs per week for hour long classes, getting your heart rate up as you are supposed too....but the weight is not coming off! Argggghhhhh!
Help! Someone come up with an idea as to how to make the weight come off! Please all ideas are welcomed!

Okay until my next post! You pray for me and I will continue to pray for you!
God Bless!

Loving Zumba

Hey everyone

Just thought I would drop a quick line to let you know that I am fine.
I have been very busy lately
Still on Methotrexate and still doing Zumba

Keep in touch!

Wow! It's been a long time!

I know it has been quite some time since I've written an update on my blog but sometimes you just get so frustrated that you just want to forget that you are ill and just want to act normal, if in fact there is such a word.

My body has not truly reacted so greatly to the Methotrexate and I still have joint pain and stiffness. My doctors decided to take me off of all of my medications to see how my body will react and to see what will be in three months....well that was in January of 2010 and my body did not last a full 30 days....My hips began to hurt again, my knees began to buckle again and low and behold that flippin rash came back all over again....This time it was not all over my entire body but all over my face.....Went to the doctor and back on the Methotrexate once again......
Hip pain is gone and knees are not buckling any further but that rash thing is not fully gone...
Now my face at times gets red in the cheek area, then there are days when those cheeks feel like they are burning, and then there are those other days where it is so dry that wow, I need to put oil on my face so that my face is not cracking open.....

So how is everyone else doing?
Oh by the way....on a PROUD Mom Moment! Jasmin rocked @ State Competition and took 3rd place and is on her way to Regionals....Go Jazzy!......

Yeah Jazzy....

Okay until next time you pray for me and I will continue to pray for you....
God Bless....

So...Do I worry now or later?

Hello

Finally my doctor has returned from his two week vacation and I finally get the results from the other blood test.

He stated that my blood test does show some slight elevation of my light chains...
I know you are like me...WHAT?
What the heck are light chains and why are they in my blood?

You know when you are sitting in the doctor's office and they are talking to you about all of these things and yes you are hearing them speak but you are really not listening...yes we are all guilty about it....and then they begin to speak in all of these big words and then before you know it you are nodding your head to Charlie Brown's teacher ...remember...wha wha wha...

So in a nut shell...Dr. Perselin (My RA) doctor is going to consult again with Dr. Likinstein (Hemotologist) again...because if you all remember they found something in my marrow over the summer then said no don't worry about it but now here we are again with the "LIGHT CHAINS" blood work....ugh....and they will call me after they "confer" to see what the next step is going to be if any....

So before you all kill me the research that I have found states this:

Multiple Myeloma and Monoclonal
Protein
Myeloma is a cancer of the plasma cells in the bone marrow. Myeloma is synonymous
with multiple myeloma and plasma cell. neoplasm. Plasma cells produce antibodies,
also known as immunoglobulins, which are proteins that help fight infection. Each type
of plasma cell produces only one type of immunoglobulin. There are many different
types of plasma cells in the body, resulting in the production of a variety of different
immunoglobulins. In multiple myeloma, one particular type of plasma cell is duplicated a
very large number of times, causing excess production of one type of immunoglobulin,
which is referred to as a monoclonal protein, or M-protein. M-protein is also called
myeloma protein, para-protein, or the protein spike. M-protein is important for diagnosis
and for monitoring treatment in multiple myeloma. The free light chains are derived
from the monoclonal protein (See Figure 1).

What are Free Light Chains?
Immunoglobulins or monoclonal proteins are composed of two types of smaller molecules,
one called a heavy chain and the other called a light chain (see Figure 1). There are five types of heavy chains, referred to by letter, with the abbreviation for immunoglobulin (Ig) before the letter: IgG, IgA, IgM, IgD, and IgE. There are two types of light chains, referred to as kappa (κ) and lambda (λ). Each plasma cell produces only one type of heavy chain and only one type of light chain. The heavy and light chains are produced separately within the plasma cell and are then assembled to form a whole immunoglobulin. When the light chains are attached to the
heavy chains, the light chains are referred to as bound light chains. However, when the
light chains are not attached to the heavy chains, they are called free light chains. For
unknown reasons, the plasma cells typically produce more light chains than are required
to create the whole immunoglobulin or monoclonal protein. The excess light chains enter
the blood stream as free light chains (i.e. unattached to the heavy chains). Thus both in the normal situation and in patients with myeloma and monoclonal gammopathies (e.g. MGUS, or monoclonal gammopathy of undetermined significance), excess light chains enter the blood stream as free light chains. The normal levels of free light chains in serum have recently been reported, along with the normal ratio of kappa free light chains to lambda free light chains. Normal levels of kappa free light chains are between 3.3 and 19.4 mg/L, while normal levels of
lambda free light chains are between 5.71 and 26.3 mg/L. The kappa/lambda ratio, which is normally between 0.26 and 1.65, is as important for diagnosis and monitoring of myeloma as are the levels of kappa and lambda light chains. As one might suspect in patients with active myeloma, the free light chain levels are higher than normal. In patients with myeloma in which only light chains are produced (Bence Jones myeloma), the type of light chain corresponding to the type of myeloma, either kappa or lambda, is present in increased amounts. But excess light chains in the serum can also occur to a greater or lesser extent with all types of myeloma, not just light chain or Bence Jones myeloma.

How is Monoclonal Protein
Normally Detected and Measured?
Monoclonal proteins can be detected and measured in both blood and urine. Serum is merely blood that has had the cells removed, leaving only the clear liquid. If multiple myeloma is suspected, your doctor will screen for abnormal monoclonal protein (M-protein) levels using a laboratory test known as protein electrophoresis. When protein electrophoresis is performed on serum samples, it is referred to as serum protein electrophoresis (SPEP), and when performed
on urine samples, it is called urine protein measure the amount of M-protein in a sample,
but cannot identify the type of M-protein in the sample. A second type of electrophoresis
test, referred to as immunofixation electrophoresis (IFE), is performed in order to identify the type of M-protein that is being produced by the myeloma cells. Typically, an SPEP is performed first, to determine if, and how much, of an M-protein is present. If the SPEP demonstrates evidence of an M-protein, an IFE will be done to determine what type of M-protein is there.
SPEP, UPEP, and IFE have both advantages and disadvantages. Among the disadvantages
is that they are relatively insensitive for the detection of free light chains, in that the free light chain level must typically be many times the normal level in order to be detected.
For instance, the normal level of one type of free light chain in blood is approximately 10
milligrams per liter (abbreviated as mg/L). However, the free light chain level in blood
would have to be at least 50 times the normal level to be detected by SPEP, and at least 15
times the normal level to be detected by IFE. An alternative test method, the serum free
light chain assay, is capable of detecting free light chains at their normal levels in blood serum. Thus, the serum free light chain assays can detect elevated levels of free light chains, even when these levels are undetectable by SPEP and IFE. This means that multiple myeloma could be detected earlier in the course of disease than is possible with either SPEP or IFE or in cases where small amounts of light chains are produced by the myeloma. The free light chain assays are best performed on serum rather than urine because of the filtering effects of the kidneys. Part of the normal function of the kidneys is to prevent losing proteins from the body into
urine. As a result, an elevated level of a protein, such as M-protein, will be present in blood serum before being present in urine. Hence, the serum free light chain assays may completely replace the 24-hour urine tests for M-protein: not only are the free light chain assays more sensitive in serum, but a 24-hour urine sample is difficult to collect and is more difficult to store than serum.

All of the above information was retrieved from:
http://myeloma.org/pdfs/UnderstandingFreeLight.pdf
on 11/18/2009

So, what does this all mean? I DON'T KNOW

It is a waiting game....Do I think I have cancer that has been started from the medication that they were giving me? No
Do I feel like I have cancer? NO
Do I feel like the next phone call that I am going to get is going to be a bad one all because they are trying to treat my Rheumatoid Arthritis....No

God is still in the business of keeping me calm
Just like I expect you to be because this is not bad...
I just like sharing the information that I hear and get so that If any one of you need to hear how to stay strong and positive ....you can use me as a guide.....I am not worried.....
I am okay....so until the next one....

Please continue to pray for me and I will continue to pray for you....

I am not worried so don't you be either.....

Don't call me in a panic....because there is no reason to be.....

I feel good other than the normal day to day RA things.....

:-)