Chronic Illness is hard...

     Sometimes being chronically ill is hard. I am used to the appointments, the medications, the pain, the feeling like crap, what I am not used to, and what I will never get used to, is the fact others are disappointed in me because I need rest, or I can't do certain things. I am feeling like I would be better off if I just had no relationships with anyone,and just kept to myself. At least then I have no one to disappoint, and hearing the people you care about the most say to you that they are sick of you not being able to do anything, to be told that I am lucky I do not have to work right now, that I have it made and they wish they could have it as easy as me, well...it hurts. I really feel right now as though no one can possibly understand. I really do not feel as though I am anything right now to people but a bother. Someone people invite places out of it being the proper thing to do, but not really being into being with me because I can't do what they can. I dunno. I am very close to shutting down again, pushing everyone out of my world and being alone. It really hurts less.

A Note to Those Who Are Mad I Often Back Out of Plans

     I am so tired of people who are angry with me for having to cancel plans, or even forgetting them, or not showing up for them, especially early in the morning, or later evening. . I have flat out told EVERYONE I am sick. I have a rare, auto-immune vasculitis called Microscopic Polyangiitis, a painful adipose tissue disorder called Lipoedema/Lipedema, Sleep Apnea, and Mental Health issues. It is not like I have kept that a secret. 
     Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety. 
     Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.

     During the day I attempt to do things to secure my future, and keep me alive. I pay bills, shop for food, go to appointments, undergo medical testing many times a month, study for school, do school work, go to classes if I can, and try to go to my meetings. By the end of the day, I can barely walk, even with pain meds. I often pull myself into my vehicle and cry because I can not move. Here's how I suggest you learn. Get a pair of spanx, but get them two sizes too small. Force them onto your body. Then you can feel what it is like to not be able to breathe, and to hurt when you move.    
     Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses. 

     Eventually you will not be able to walk. The pain will be so great that the minute you sit down, you will be unable to get back up to do your normal plans. Watch as you do whatever it takes to rest...desperately wanting to go to your friends, to do stuff, to take and make dinner for your family, to go to a movie...but you can't because the pain is so great, the fatigue is so immense (keep doing the benadryl too after all...I live with both).

     Next add on something that causes nausea. EXTREME nausea. I dunno what is safe to take that can do it, but if you know take it. Now try to go on about your day with the bendryl in your body, the wraps and pain, and now nausea. Add a rubber band on your head, and feel the pain and pressure of the head pain.  While you are at it, why not put on a mask over your mouth and nose in addition to everything else. That mimicks the hard to breathe and lack of real oxygen in your body. 

     Now, do all of this and then you can come at me angry for me not making it to things I have planned. Because only then will you kind of understand why I do it. I am not doing it to inconvenience you. Trust me, I would rather go to events, meet with people, go to church, go to people's homes, go to movies, go to the fair, walk, etc than deal with this crap I do every day. Maybe it is high time you all get off your high horses and start to see something as it is, not as you think it is. 

     And for the record, if you are angry I don't make it to something talk to ME. Don't badmouth me to others in my life. That makes YOU a jerk, not me. I ALWAYS find out. And it pisses me off. I don't do it to others. If you bitch about me to others it solves nothing. If you talk to ME you might understand what happened and why. Am I angry? Yes. I am tired of  people treating people like myself like dirt. Take time to understand. 
     After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.

Update (again)

The above photo is the medications I take on a daily basis. I must say that it is annoying being sick all the time. I have been stuck in bed much of the time, unable to stay awake. Chemotherapy meds have caused mouth sores, nausea, and such severe fatigue that I can't even sit up at the computer. I hate this, but people die from this disease. It killed actor Harold Ramis of Ghostbusters recently. I need to keep fighting because of that fear of death. It is getting better now however.
I have been horribly behind on my school work, but I am catching up slowly. Two of my three professors are allowing me to submit my work I am behind on for full credit, and that is helping. I hope the third one will allow that as well, as this is extremely difficult to juggle to start out. I am pretty used to the chemo meds now, and I am feeling better despite everything. I have caught a cold however, and I have to watch that. A cold for me can kill me due to my immune system. Back to the doctor I go tomorrow!

A new update is my mobility issues have been attributed to another disease called lipoedema. It is abnormal fat cells, a disorder of the adipose tissues in the body. It leads to huge fat deposits on your legs, thighs, butt, and sometimes arms. Often mistaken for obesity, this fat is not responsive to anything, diet, fitness, even bariatric surgery. It is essentially forcing my body to live in a fat suit forever. It sucks major! There is no cure, but the compression wraps and surgery can help ease symptoms. We will see if I can gather the funds I need to get surgery. As for now that is my legs (above). Lipoedema can make you look fat. The worst part is it happens to abnormally thin to obese people. It is not a disease of obesity, but a disease of the adipose tissue.. I will post a few pictures about it below. Anyway I hope all is well. Much love!

More lipoedema photos:

Lipoedema Stages 1-3

Lipoedema Legs, Typical Manifestation

Buttocks and Leg Fat Deposits 

Lipoedmea Fat

Lipoedema STages 1-3

Arm fat in lipoedema

Sleep Study, Thyroid Fun times, and REMISSION!

So, I went inpatient for a sleep study. It was creepy being hooked up to literally 50 or so wires. I had to have a cannula in my nose, with a small microphone by my mouth, and an oxygen sensor on my finger. I have been having major problems with staying awake lately. It had gotten so bad I haven't been able to keep up with school work deadlines. I literally sleep so much, up to 20 hours a day at times, that there is not time to do the work. Thank goodness my professors have been wonderfully understanding! I am behind but I WILL catch up. Anyway, I became so depressed that I was ready to give up. After all, in my mind I may as well give up if I can't live my life anyway. Fortunately I went to the doctor to discuss these issues, and they took a thyroid test and stuck me into a sleep study. My thyroid was 4.37, which is within the normal 5.0 range...and one doctor dismissed it as I Am fine. I went to my other doctor who said the prednisone actually can artificially cause a lower TSH level on a test, so my 4.37 in reality could be more like a 7.0 or above, but is masked from the meds. The endocrinologist confirmed that, so they are getting me in for thyroid help very soon. Hypothyroidism makes you tired, cold, gain weight, your skin is dry, you lose hair, get a hoarse voice etc...all of which I have.
Anyway, during my inpatient stint Wednesday/Thursday I kept waking up. I honestly felt like I hadn't slet at all, and then they came in and woke me up. Evidently my breathing does not stop, but gets so shallow my blood oxygen level rapidly drops. It was to 80% and they decided to intervene before it went lower. They were not going to chance letting it go to see how low it does get. Anyway they stuck a CPAP machine on me, with a cannula type mask/nose prong. It was amazing. I slept all the rest of the night, about 6 hours. I had my first dreams in awhile and woke up refreshed. Now I am home again and I am back to tired all the time. I have to wait for the recheck appointment in a week to most likely get the prescription for the CPAP machine. I hope that these two things being taken care of, the thyroid and the shallow breathing at night will help me get back on track.
On a neato note, I am in remission (beginning stages) of my Microscopic Polyangiitis. They are going to start with lowering me off the prednisone first, then the methotrexate will be switched to imuran. We will see after awhile on that if I can get off the meds, and if I stay in remission or have another flare. This will be my second remission. With this comes the working on repairing the damage the illness has done to my heart, lungs, body. I will be working on Physical Therapy to strengthen my muscles which are terribly weak and prone to injury. I am goign to therapy for the lymphedema I ended up with in my legs. I am going to the weight clinic, and lung doctors to try to get my lungs and weight under control again. This disease is not actively producing the damaging proteins to my blood vessels right now, so I have to play repairman to my body now. It's rehab time, and it is going to be hard work, but I can do it. 
What does the future hold? Right now a nap...then hopefully I can finish my homework. Until then I hope you all are doing good. Much love.

Behind in EVERYTHING...

I have been so behind on everything, including school. First it took almost two weeks into school just for the books to come in, putting me behind already, then comes the weather knocking out my internet, and my medical problems. As it is now, I have had a headache for two days. I hate the weeks meth (Methotrexate not street Meth you weirdos) really kicks my ass in. I slept most day Wednesday, most Thursday and all of Friday (today). This is not conductive to getting my homework in on time. Add on to it the nausea , swelling in my legs, hands and face, headache and pain (along with not having access to my pain meds until March if the other parts of my medical team don't get off their ass and figure out who is to give me some pain meds so I can function), well this has all caused chaos in my life. At least now I have a homework system I just finished setting up which helps with the forgetfulness of what is due when, and the brain fog I get with chemo. I need to call my professors and talk with them in person as my emails aren't being answered (I think they may not have sent due to glitches with my computer), and see if I can get something done to help me. I need some access to my assignments early, or see if I can get my work done due Wednesday on Friday because being awake trying to keep up on Wednesday makes me sleep for 2 extra days. If I just sleep all Wednesday I usually am better and less tired the days after chemo. Anyway, there is a video pending, I will be posting it later on. I feel like I am in crazy land. I am consistently late, but I am finding ways to fix this. I can't let my assignments fall apart right now, this early. First month is usually the hardest for me as I and my body adjust to schedules, shuffling of meds and appointments (yes I have to shuffle my meds on days stuff is due, like the chemo because they effect how well I can function on a given assignment with memory, wakefulness, or any combination of things). So I have to adjust schedules, meds, appointments, sleep and more to coincide with my schooling. Normal students may not understand this, but anyone who has gone to school who deals with a rare, chronic,and/or life threatening disease, and taken medications that are literal poison to your body, dealing with their side effects will understand 100%. Now hopefully I can get all caught up this weekend, talk to my professors, and hopefully they will let my lateness slide and be more lenient on me this first couple weeks. My professors are pretty nice, and understanding so I hope they will be able to understand. Addressing the confusion and forgetfulness with an awesome app called the homework app is part of the cure to the issue, and if I can get my adjustments from disability services in, hopefully they can put in the accommodations so I can be more successful. Anyway, I need to rest again. Headache from hell. I will try to type out my assignment, but honestly this is so much easier when I Am feeling sick...having to think and be critically thinking about a specific topic when I am in so much pain is SO HARD, but I will try...if I can't I will just get caught up on all my reading...it is far easier on my eyes with a migraine to read a paper book and not look at a computer screen anyway. Love you rare disease buddies, and if anyone has any questions, as always, feel free to ask! I am thinking of starting a video blog answering questions. Whatever they may be, personal, medical, stupid, or creepy. That will have to wait till I get caught up n school though, but hey I will be glad to collect questions until then!