Thursday, June 24, 2010

Stuck Between a Rock and a Hard Place

After reading a comment that I just received from a reader on my last post, I just don't feel that I have much to complain about. I so feel for you and completely understand your situation. I am saddened that you do not have insurance; I just couldn't imagine. I shouldn't complain and yet as I write I can’t help myself. I truly want to let you all know that my intention for sharing this blog with you all is to help my family understand why I am who I am and to help others struggling with the many Immunicological diseases that they are dealing with to read and see if there are some similarities and in some way help. When I was first diagnosed I scoured the Internet with any information or photos that could compare. As my youngest daughter has taught me in this past year..."Our pain is the only pain that we can individually understand...our reality is our own and cannot be compared to another, for it is our reality." She truly taught me a valuable lesson and I thank her for that; hugs from mommy my sweet bean.
I will share my reality as it stands today. I had my three month follow-up with my Rheumatologist and in addition to my standing diagnosis’s we found additional problems that I begin to address tomorrow with my general Internist.
In the past two months the inflammation in my knees has been increasingly, excruciatingly painful with swelling and fever. The doctor has scheduled me for additional x-rays because she assumes that there have been additional changes in both knees of Rheumatoid Arthritis. Last year there showed a moderate amount of RA apparent in my right knee and upper spine. Today it was apparent to her that there has been a significant change to my knees and we hope that the x-ray will show the level of change.
It is very beautiful where I live, however with the beauty come allergies. The Native Americans refer to this valley as the “Valley of Death”. Allergies and Lupus just doesn’t mix. My body attacks the allergens and just doesn’t know where to stop and it continues to attack itself (we all know this by now). I have lived here for almost ten years and as my body continuously attacks the allergies it begins to break down and weaken and therefore I have possibly developed Asthma. I learned for the first time today that Asthma is another Auto-immune process. I will be evaluated tomorrow for confirmation. The Rheumatologist suggests that I immediately begin an inhaler. For the past two weeks I have been waking up without breath and sounds that I just couldn’t believe coming from my mouth. It was so alarming that I recorded it one night to show the doctor. One thing I have definitely learned is take pictures and/or record because you may not have those symptoms by the time you get to your next appointment. It never fails that by the time I get to the doctor it is all better and then I get home and it happens again... more to come on this tomorrow.
Over the course of my life I have struggled with Anemia. Along with many auto-immune disorders Anemia is always in tow. Today my blood tests show that I am severely anemic and will have to begin the usual remedy of an Iron supplement. Some anemias are caused solely from your diet. However, with Lupus there are issues with your body absorbing and storing iron. I have been on every iron remedy from liquid to suppositories. This is one problem that I have dealt with prior to ever knowing that I had Lupus. Over the past 6 to 9 months I have struggled with debilitating fatigue and have bounced from my Thyroid plummeting to Anemia. Just as I repair one issue there is another that is out of balance and this is so frustrating. When I keep telling the doctors that “I am tired”, they say “You shouldn’t be this tired” and then the blood or urine shows that I have a true reason to be so fatigued. The specialist’s response is always, “So, you do have a reason to be tired.” This makes me feel so crazy sometimes because I try to just shake it off, but I just can’t. I then feel vindicated when the test results prove my feelings of fatigue. For many years I was brushed off as the “typical house wife”…depressed and just need some exercise and it will all be o.k. Trust me feeling vindicated nowhere compensates for the demoralizing ways that women get treated in the medical system. It took my body completely breaking down right before my eyes before I was believed and adequately treated. I still continue to have struggles even with the final diagnosis of these diseases. For anyone that is dealing with these same issues, please do not give up and continue to fight to be adequately treated. If you are reading this blog because you share some of the same ailments that I do, you are NOT a crazy housewife, although at times it does feel like it.  You may not have what I have, but similar to a snowflake, there are never two auto-immune diseases alike. We are special!
In the past year I have continued to fight ongoing kidney and bladder infections. Eight of the past twelve months I have been positive for infection. The other four months I self-treated, because I was just exhausted with the back-and-forth Urologist visits to just prove what I already knew. One month ago I had blood in my urine and just didn’t have the energy to go to the doctor, so I self-treated with the medication that I had at home. I do NOT recommend this! I continuously try to limit the amount of antibiotics that is in my system, because I know someday they will cease to help. As the lab assistant handed me my sterile cup for my specimen today, I knew what the results would show. With sorrow I gave the sample. Without any doubt the results showed blood in my urine along with bacteria. The lab will grow the culture and I will again start another round of forty-five days of antibiotics. It is just getting harder and harder to kill the infections. I will get the official results next Tuesday.
So, needless to say I am physically and emotionally exhausted yet again, but I can’t help but hear my daughter in my mind and it gives me the right to feel sorry for myself, because this is MY reality today.

1 comment:

Taz said...

I'm terribly sorry to hear of your diagnonsense. I too suffer with lupus and RA & PolyArthritis along with a host of deficiencies I would wish on no one. I feel for you and each of us that must learn to grab life by the horns in spite of the desire to just lay it down for a day. I too gained an enormous amount of weight when i was put on prednisone for emergent treatment. I have only had to take it twice more since then. I am just now beginning to loose the weight almost 2 years later. 17 pounds in the last 60 days. It is the devils drug yet we must keep company with it to survive. I will keep you in my prayers and thoughts and stop by when you can. Take care & gentle hugs. Tazzy