So, since a big part of this blog for me is to spread awareness of my disease and maybe help others in whatever they might be going through I’ve decided that I will post some updates from time to time to keep you in the loop on how things are going. First of all, Sjogren’s is my biggest and worst disease in my opinion and so that is what causes me the most problems and what I will mostly address in these medical blogs. Just a little background though in case you are interested and choose to do any research on your own. I was first diagnosed about maybe 10 years ago with dermatographism. I have asthma and pretty bad environmental allergies but started breaking out in hives all over my body and my throat would swell and my eyes would swell shut. I would end up in the ER getting Epi and Benedryl shots weekly. At one point I was getting 2-3 Epi-pens a day at home. That was a nightmare for 6 years before they figured out what was wrong. I had been put on steroids for a very long time also prior to diagnoses causing me to gain a ton of weight. I was a size 4 all through high school and college. My doctors are confident that all the steroids led to my diabetes which was discovered about 4 years ago. It was only a year or two after that when I broke out with a bad rash on my face that nothing seemed to improve. It became raw and ended up even on my eyelids. I saw a dermatologist with no results, so I was referred to a rheumatologist for a full spectrum of allergy testing since I hadn’t had it done since high school. They also did patch testing on my back thinking that maybe it was a contact allergy. While I was allergic to pretty much everything but air, my doctor also did some blood testing to “eliminate” the possibility of it being systemic. He was convinced it was my allergy to lanolin which is in many lotions and cosmetics even though I insisted to him that I NEVER put anything on my face because I know how sensitive my skin is. As he was attempting to convince me, he got into the computer to check the blood test results. His face changed immediately and he apologized and said he wasn’t “expecting this”. That’s when he told me that I either had Lupus or Sjogren’s and would need further testing but that they were very similar diseases. While this diagnoses gave me answers I had desperately been needing, it was definitely a crushing blow. No cure…progressive disease…not a lot of positive there.
The last couple of years have been pretty rough and I am still learning that I need to accept that I am not like other people. I grew up around dairy farms and have always loved milk straight from the bulk tank so you can imagine my happiness when a close friend said she would hook me up from her farm. My family loves fresh milk too and we were drinking it daily. My friend’s family drank it daily as well and even while she was pregnant with her kiddos. Their bodies all processed it fine. I, however, spent 12 days in Strong hospital with a severe bacterial infection in my intestine that unattended much longer could have killed me. Random fact: My daily life includes taking 17 pills including vitamin supplements just to maintain my reality of “normal”.
So now that you have some background, here is the current situation. I have been fighting yet another infection, this time kidney, for the last couple weeks. I was told that I was extremely dehydrated as well. I have had intense pain, nausea, shortness of breath, weakness, and exhaustion. They started me on a 5 day antibiotic which after 3 days and sending cultures in they discovered was not strong enough to fight the strain of bacteria and so I was switched to another one for 10 days. The antibiotic has improved my condition but I am not symptom free and will likely be returning to the doctor soon to be sure the infection has cleared.
The problem with an autoimmune disease as I mentioned in my first post is that your immune system attacks itself and your organs so in order to combat the disease you need to reduce the strength of your immune system. However, that also reduces your immune systems ability to fight against the things that you want it to fight. I take pills and injections that suppress my immune system to help battle the damage it is doing to my body, but when an infection arises I have to stop those medications so that the antibiotic can work. This allows the symptoms of my disease to flare up. Lose lose situation:/ If you see or have seen me in the last week or so, I have a nasty rash on my face that I am trying to combat with ointments and my joint pain is at a high. There are also things that you can’t see such as increased fatigue and more shortness of breath.
In addition to all of this, I have been dealing with randomly breaking blood vessels that cause pain and nasty bruises (often in my hands) for some time now. My doctor is concerned and while it could be due to my disease is sending me to a hematologist for more testing which is scheduled for Oct 12th.
Like I said in my first post, I don’t share all of this for sympathy. My hope is that someone experiencing some of the same things can take something from this and for those of you who aren’t be thankful and appreciate again that we each have our masks. I am generally a bubbly and chatty person. Don’t take it personally on the days that I look like a sedated grizzly bear (tired, ornery, and less than social). I promise I’ll bounce back to the same loud and crazy person that I am. I pride myself on not letting this disease beat me or stop me from what I feel I need to do, but we definitely all have “those” days. I’m generally more of a teddy bear than a grizzly but I would still caution that you should never stick your fingers in the bear’s cage;)