We Moved!

Well now! It has BEEN A WHILE!!

I have left my beautiful mountains, desolate deserts. Now, I am in the Mid-west. Illinois! Wow! What a change! I miss my sunsets, with mountains in the foreground. The shifty weather. And what is this wet air stuff?! Hahah! I tease! I really like it here. Lower elevation, by far! Back home- in Grand Junction, CO- it's 4,593 ft. The medical staff I saw was in Denver, and sat at 5,130ft at the lowest. Now I live at  (READY?!) 707ft!! So what does that mean for me? I breathe a little bit easier!

Pat was accepted to Western Illinois University this year for a Master's in Mathematics! The tail end of June we moved to Macomb, IL. Lovely little town! Population of 19,254, the school holds 12,205 students. It's about 4 hours from Chicago, 2 hours from Peoria, and 2 hours from Springfield, and the square center of McDonough county. Tallest building in town is a dorm on campus! So are the 2nd, 3rd, and 4th tallest! School takes up the majority of space in town, and definitely provides the majority of the local economy.

The move itself was pretty easy. We loaded up the car, a truck, and a trailer and headed East. We visited Macomb in May before deciding it would be our new home, and we really fell in love. OK, fine. I fell in love! It felt so much like home! The people had that Mid-Western kindness, it was a small tow, with big town feel. The school is home to many international students, mostly from the Middle East and North Africa, giving the community a diverse feel. 

Once we found a house, and well before we moved in, we had the pleasure of meeting our neighbors! So warm and welcoming, we have become great friends with not only them, but their daughter and her family! We have learned that PH is in their family and that they have autoimmune disease involved as well. Kind of a miracle to find a family who can relate so fast. It has been wonderful connecting to them! 

Well, I don't want to blather more about the move or anything today, but I have lots to tell you all! How about I return (Soon I promise!!) and talk about how someone like me moves, changing doctors, and how my health has been the last few months? I will make it a series! Hahaha! Let's just see if I can come back within a month. Week? By the weekend?!

Lupus Awareness Month

My post in the PH Plus Blog:

May is Lupus Awareness Month, and today is World Lupus Day!

So what is lupus?

It is an autoimmune disease which can affect any organ system in the body. There are 4 types of lupus. SLE, or Systemic Lupus Erythematosis is the most serious form of lupus and it commonly attacks the heart, lungs, and kidneys. CLE, Cutaneous Lupus Erythematosis, is limited to the skin, causing rashes and lesions (sores). Unfortunately CLE can lead to SLE over time, and children (making up 5% of patients diagnosed) who develop lupus early in life are more likely to have serious complications. NLE, or Neonatal Lupus Erythematosis, affects the infant of a mother with lupus.  The mother’s antibodies can cause lupus symptoms in newborns which disappear after a few months. There is also DLE. Drug-induced lupus Erythematosis is a reaction to a few specific drugs by a small minority of people. Generally the symptoms of that lupus disappear after stopping the medication causing the issues.

How is Lupus related to Pulmonary Hypertension?

Well, lupus is significant cause of Secondary Pulmonary Hypertension.  Studies have shown that up to 60% of Lupus patients develop some kind of pulmonary involvement, including PAH. Related to scleroderma, lupus can also cause damage to the blood vessels of the lungs, leading to increased pressure.

Who can get lupus?

Anyone is capable of having lupus. It is not a contagious disease, so you cannot “get it” from someone. While 90% of the patients diagnosed with lupus are women, men are capable of developing the disease as well. It is most common for women to develop the disease from the ages of 15 to 45; however children may also develop lupus.  For men, diagnosis later in life is more common. African Americans, Hispanics, Asians, and Native Americans are most likely to develop the disease.

So what are the symptoms?

Since SLE can affect any organ system there are many different symptoms of lupus. The most identifying of these is the “butterfly” rash that gave lupus its name, because it looks like the “mask” of a wolf and lupus is the Latin name for wolf! Other common symptoms include extreme fatigue (we all know the effects of that!), headaches, painful and sometimes swollen joints (90% of patients experience joint or muscle pain), oral lesions or ulcers (the most common symptom with 95% of patients developing these), fever, hair loss, and sun sensitivity. As the disease progresses, more organs are likely to be involved. While up to 40% of all patients will develop renal complications, over 50% of children diagnosed with develop renal disease, and this is thought to be caused by the long duration of the disease.

How is lupus diagnosed?

Because there are so many different combinations of symptoms, and those symptoms are common in many diseases, it is often very difficult to diagnose a patient as having lupus. Like patients with PH it can take 5 or more years to diagnose each case! There are several laboratory tests that are given and analyzed along with the patient’s entire medical history in order to rule out other possibilities. As with PH, doctors are taught to look for the horse first, seeing the zebra after much testing!

Will the children of lupus patient develop lupus as well?

You might think that since lupus is genetic in nature that it would be hereditary. That is not the case. Only about 5% of children with one or more parent living with lupus will develop lupus as well. Unfortunately for those children there are no genetic tests available for early diagnosis.

  How is lupus treated?

Like PH patients, those diagnosed with lupus must see a specialist, a Rheumatologist. The involvement of other organs may require the addition of other specialists, and the coordination of all doctors on the overall care of the patient. Many patients will take many medications often for the rest of their lives. There is no cure, and no treatment is guaranteed to work. It has been found in many cases that, while PH cannot be cured or treated with other medications, controlling the lupus will also keep the PH manageable. Drugs include steroid, anti-malarial, and immune-suppression drugs. Care and management of this disease can be very expensive, especially when a patient is no longer able to work or provide for themselves.

What kind of life can those living with lupus expect?

80-90% of patients diagnosed with SLE can expect to live a relatively normal life. There are many organizations out there to help all patients cope with the challenges presented in their life, including utensils to assist opening jars! To assist the patient with medical costs, many drug companies offer financial assistance. Many communities also offer help with housing and mobility.

Where can I get more information on lupus, or offer help to patients?

The Lupus Foundation (www.lupus.org) is the lupus equivalent to PHA. My favorite patient support group online is But You Don’t Look Sick, the origin of “The Spoon Theory”. (www.butyoudontlooksick.com)

Resources:

http://health.nytimes.com/health/guides/disease/systemic-lupus-erythematosus/complications.html

http://www.lupus.org/newsite/pages/lupus-facts.html

http://www.lupus.org/newsite/index.html

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html

http://www.phaonlineuniv.org/Journal/Article.cfm?ItemNumber=718

Wow!

I think a lot has changed since I last posted, and through facebook and what not you have all pretty much been updated... but I should update here too!

In my last post I had just gotten a new Hickman without silver. Well that lasted a long time!! I just had an infection (for sure this time an infection. It grew stuff) almost  two months ago. Seriously much longer!!  I went from May of this year to November of this year without using my oxygen! I graduated from Colorado Mesa University with an AA! :) Life has been good! Pat is still loving me and we are preparing for him to go to Grad school in 3 semesters and I will be joining him. Mom is well, and so is the rest of the family. We lost Princess, and Mom and Dan separated. That is part of life, I hope they can all be happier now.

I have started a new drug for my lupus, Benlysta. It is an IV infusion I get once a month. I think it is working! This week I start my dose of prednisone at 10 mg!! I had to get a power port for the infusion, as my veins have become increasingly difficult to find for IV. I have used it twice, once for an infusion, and once for a procedure. I have been officially diagnosed as having Celiac Disease, and colitis. Now to figure out where the colitis is coming from!

Last week I went for a check up and the doctors found water on my heart again. For a few weeks I had been complaining of S.O.B. (shortness of breath, not son of a bitch), so this explained that. We upped lasix for a few days and I am feeling better! Lets hope we caught this early!

And last, but not least, I have started going to acupuncture! Yay! I really like it! I think it has really helped with the back pain I have had for the last few years! (Oh yeah, I learned that I have osteoporosis in my hips)

School has gone well this semester, but I am in a little over my head. I have had to drop one of my three classes. I will pick it up again in a few semesters. I had hoped to do Tai-Chi next semester, but I feel with the recent heart activity it is best not to push. I am registered for 2 classes, and I think I am good with that. Winter is (almost) here, and I am hoping that everything is under control.

Spring, injections, and the ocean

Again it has been a long time since I posted, and I am very sorry. Things have just been status quo, until recently! I am still taking classes at CMU and am loving it! Spring is here and I have started gardening. Of course I never do anything the easy way, so my garden consists of many things, including my new lemon tree!

My last appointment with my PH specialist went really well. He said that my heart is almost completely normal! The size is normal and the output is almost there! He was so happy, and so were we. However there is a catch, as there always is with me. My lupus is in the process of changing and developing new symptoms. Yep. Totally active and not responsive. In other words... the chemo didn't work. So we are on to the next step, a drug my doctor has never worked with. Benlysta is a drug given by injection, and yep, I would be going to Denver every month. My next appointment with my Rheumatologist is at the end of April, and we will be setting things up then. This is the drug that was just approved by the FDA for lupus, and there are no long term studies on it. The side effects seem to be the same as the chemo I was on, except there is no increased risk for bladder cancer, and as far as I can tell I will not lose my hair.

I get to go to FLORIDA!!!! This year is the PHA's PH Conference and it is Orlando Florida! I applied for a scholarship and was awarded it. June 22-24. Tami is going with mom and I and is letting us use her condo! THANK YOU!!!!! I am really excited about this! I will keep you all up to date with how everything is going! I need to get a suitcase now! I got a swimming suit that fits...

Lastly... I get to graduate!!! May 12!

Oh, I guess that is not completely all...    Visit my new blog Colorado Blueberry! All about my experiences gardening. I needed to keep track of what I am doing for the blueberries so I know what works and what doesn't, and thought... well hey! I might as well blog it! So maybe I can keep busy on both of the blogs! Wish me luck!

Spring Catch-up

I am sorry! I fail! I haven't talked to you in months! I will try to get back to blogging. I think it is because I just didn't feel anything was new, different, exciting, or just worth blogging about. I mean little things, wonderful things, have happened, but I didn't feel they were important to you!

So let's see, what has happened? Well I took a class last semester at Mesa. Philosophy. It was a nice class! I think a good one for me to start with! Did well enough too. I got a C. Mom was appalled, I think she believed I could do so much better. True... I have been able to do better... but my brain is out of practice and I do not care about grades. A C means nothing to me when I have nothing I can do with it. I am not looking to start a career, so it doesn't matter what I get. What matters is that I am doing it. This spring I took 2 classes. One was health and wellness and the other was an activity class. I still don't feel that I should have to take either of them, but the state requires it. They were just 1/2 semester classes and so they are done. Well, the health and wellness is done. I just need to turn in my exercise log for my activity class.

I had planned on going to the gym every day this week. I just walk for 20 minutes on the elliptical and then do some stretches and such. But I got sick. Yeah, I was exposed a little over a week ago and thought I had made it out of the woods. NOPE!! Damnit. I am doing my best to hydrate, and eat every now and then, but my body isn't retaining anything. I just hope I don't have this too long, I am afraid to loose too much weight.

Just before Christmas I went gluten free. I was having so many digestive problems I was miserable. Man has that helped!! It took me a while to really get into the swing, but now I am all there. Ant gave me 3 cookbooks that have saved my life! I have also found a blog I love to get ideas and recipes from. http://glutenfreegirl.com/
She apparently has a cookbook out too. If I get a scale I will have to get that book too! She uses weight to measure ingredients, not cups.

Niki has come home from Alaska, as have the girls. Her and Joe got a divorce and I hate his mother. I am glad she is home though. I think things will go better than others expect it will. She has support here that she didn't have there.

I also moved my room. I (well, mostly Pat) painted the room down the hall and moved me and my shit over! I am loving it! I think I will be happier here, I can grow plants in my room!

At my last doctor's visit we found that my lupus is VERY active (we knew that) and that my PH is not doing well. We are hoping that the latter is just a fluke. I will go back mid April and hopefully things will show that it was false. Cross your fingers! I am now on Medicare. That is both a good and a bad thing. We will see how it goes! March 1 was the start, so I have no idea yet!

So that is about it. I will leave you with 2 questions... anyone have a gluten free recipe for the girl scout Thin Mints? It is killing me to even smell them!! And... how do you keep a cat from using a raised garden bed as a litter box?

Seasonal Depression

I have found that I am a sufferer of seasonal depression. No matter how good my outlook, once the fall hits I become blue. the other week I found myself thing (again) that this could be my last fall, last holiday season. I am not supposed to do that!! Today I saw my primary (back to seeing Dr Terry) and he is upping my antidepressants for this season. We will see how that goes! I am hopeful! He said that considering everything, I am doing very well. He was pleasantly surprised that things are going so well for me!
I also got my new pump!!! Tuesday I had a nurse come train me from Denver on this new CADD-MS 3 pump! It is so tiny!! The size of a small cell phone! Mom and Dan are relieved that the cord is shorter. They were always freaking about the other one getting caught on things. Now that this one straps to my belt or pocket, I don't need a long cord to account for movement. It is slightly water resistant, so I am not attached to the wall when I shower (YES!!!) and I can play in the bumper boats without fail!! Next summer I see a day of bumper boats and mini golf!!!
There was a bit of a freak out incident though... Because of differences between the pumps, the nurse had to empty, flush, then prime my line with the new concentration of medicine. Well, she gave me a bit too much, so I had an overdose. Luckily it was just a tiny bit too much, so the reaction only lasted like an hour. But it was an hour spent remembering what it was like to start the medication. It did remind me of how much better I really am doing. When I started, those side effects were acceptable, better even! Now I didn't want anything to do with them!! So I guess I needed reminding that I am a LOT better!

King Tut and Docs.

Well Denver was fantastic! We went to the King Tut exhibit, stayed at my favorite hotel, and in general had a great time! This trip was just a checkup for both doctors. The rheumatologist did lab work, and says that I am having a flare. Nothing too big, joint pain and a new rash (discoid). There was talk about CREST syndrome, so now I have to do research on that. He asked if I was happy with where my symptoms were, and I said no. Depending on what the lab work says and how I feel we may try to change some medications. I go back to him in December. The cardiologist (who I see for my PH) said that my heart function and size are back to normal, and that my pressures are only slightly elevated showing mild PH! Yay!!

I start training tonight for a new program that will be beginning mid September, a mentor program. I will be contacted by patients with questions or concerns by email. The hope is that this program (there are several mentors) will be able to comfort and inform patients with new diagnosis, and of course those with not so new diagnosis.