The End of Memoirs of a Schizoaffective

Since my life no longer centers around my mental illness and my blog posts in the future will center around my physical health as well as how that affects my mental health, I feel that making a new blog is best.  I don't want to mislead readers with the name and description of the blog and have them expecting talk of life with mental illness.

I will make one more post once I get my new blog established for those of you who wish to keep reading my posts, but I'm not sure how long that will take.

I appreciate everyone who took the time to read and/or comment on any of my posts.  I hope they helped you feel as though you were not alone in your struggles and maybe helped you discover new ways to cope.  I know blogging truly helped me to be able to sort out my thoughts in a cohesive manner and really understand them and I will continue to as long as I can.

Empty

My mother has always been selfish, jealous, and manipulative.  I have cut her out of my life several times and it has always been for the best.  And then I have always been backed into a corner where I needed help and had no choice but to ask her.  And she loved it.  She made me feel guilty about everything in my life from as far back as I can remember and made fun of me for not knowing how to do things she was supposed to teach me.  She chose herself at every chance and left me six months after my first suicide attempt at 16 years old.  When I have tried to tell her about my pain and explain about my limitations she didn't listen to me.  The little she did help me with she held against me every chance she got.  And I chose once again to cut her from my life.

My brother has been barely taking care of the apartment since the pain has gotten to be too much for me to help.  He waits weeks to take out the trash, forcing me to leave rotting garbage.  He has lied and stolen from me, and lied about stealing from me to my face.  And then he let his air conditioner leak into the floor, severely damaging the apartment below us.  Because we were barely making it by, I borrowed money and got us another apartment to avoid the eviction we would be facing when couldn't pay the damages.  He decided he was tired of “helping” me with the limitations and tired of me getting angry when he yells at me.  He doesn't want to deal with me.

I understand that I am supposed to keep fighting to keep from hurting people.  What I don’t understand is why these people who won’t help me, who make me realize that I have nothing to give and all I am doing is taking, what difference does it make.

With depression, I know that things can help and it can get better.  But with this pain, the things they tell me that will help, don’t, and the things that could they won’t give me because of my history.

No one wants to hear how scared I am that it really is fibromyalgia because they can't help me, so I just want it to be something I can actually fight, not suffer from.  No wants to hear anything.  They just want me to pay their bills, and take out the trash, and clean the apartment, and take them places, and be their friend when they need something.  And I can’t.  I can’t even contribute to a normal conversation because what do normal people even talk about?

How am I supposed to live like this?

Worthlessness and Anger

I am so scared and I am so disappointed in the woman I have become.  No one understands.  And I am so angry.  And I am so fucking tired of the pain.  Am I really expected to live another 60 years in ever-increasing pain? Of new pains and the old pains getting worse and worse and worse...really?  I barely lived through accepting my limited life with mental illness and now I’m expected accept this shit?  While doctors question whether I’m actually in pain like they used to question whether I was actually anxious, or depressed, or suicidal, or hallucinating.  But this time it’s not because I’m young, it’s because my chart says I’m fucking crazy and I had chronic pain when I was diagnosed crazy so any pain is seen as a “somatic disorder”.  Or in your fucking head.  That’s right, not only does my chart say that I’m fucking crazy, but it also says that my crazy makes me think I’m in pain.  But wait, there's more!  I was stupid enough to admit that years ago I used some drugs recreationally and then again last year to deal with all this fucking pain.  None of this had ever shown up on a test, I was just stupid enough to think being honest was best.  So not only does my chart say I am crazy balls, that my crazy balls thinks I am in pain when I’m not, but I am also a substance abuser.

Anyway, my point is I don’t know what is wrong with me and that is scary.  My anxiety makes it scarier.  And, no one will even acknowledge the parts that are genuinely scary.  I have nothing to give and cannot even take care of myself or my home on my own anymore.  I am worthless.  I am incredibly angry at the situation and the people who are making this harder, including myself.  And I am depressed and tired.

A Real Look At My Life

I have been sick in one way or another for over six months.  My pain has stopped coming and going and is now constant.  It, instead, gets excruciating in certain areas.  None of the medications they gave me helped.  Because of all of the health issues I have isolated myself to my bedroom.

I have moved my TV to my bedroom and gathered as many pillows I could find.  I keep the light to a minimum (because of the never-ending migraine) and the captions turned on while I binge on Netflix to keep the volume low.  I usually have my ringer turned off or at the least on vibrate since when I don’t get all the sleep I can, everything is worse.  With my struggles to get to a comfortable body temperature I am using a combination of an electric blanket, a pile of regular blankets, an air conditioner, and a fan.  I am just trying to figure out how to feel the best that I can, no matter what is wrong with my body.

I don’t have it all figured out yet.  I have trouble with the shower because standing for awhile with the dizziness and joint pain makes me worry about falling.  Unfortunately, my tub is also difficult to get out of on my own and it has no cushion.  I have started to consider a bench for the shower since my skin is giving me issues.  I have tried wipes and lotions, but I think my next step is to try showering more often.  Money just happens to be an issue.

I have been on Social Security Disability for several years based on the diagnosis of schizoaffective disorder.  I have hardly enough money to live off of and going back to work is (obviously) still not an option.  All of these surprise medical issues that don’t get better are putting me in a place I never wanted to be.  It is bad enough that I can’t get up and go to work for a paycheck, but now I have to ask for help for basic things.  I am not elderly, I am 29 years old.  And I have to ask for people to carry things, wash my dishes, clean my messes, or do my laundry.  I struggled for so long to accept that I couldn't work, and now I have to struggle to accept that (hopefully in short periods) I can't always take care of myself.

My life, so far, has been paved with many experiences that most people never have to deal with.  I’m not the kind of person who finds meaning in the trite “What doesn't kill you makes you stronger” crap.  I would prefer to be oblivious to the problems I’ve had to deal with and learn by simply hearing from others and empathizing with them than suffering myself.  Anyone who says otherwise is lying to themselves.  What I do know for sure is how everything used to be in black and white, I now see how things are almost always in some shade of grey.  Motivation and point of view matter.  They ALWAYS matter.  And so I do my best to assume people have the best intentions and people make mistakes.  It makes reading things on social media a hell of a lot different.

Nonstop Health Issues

Unfortunately...well, maybe fortunately....it's a toss-up really...my blog is starting to focus more on physical issues than psychiatric ones.


While I have still been dealing with depression and anxiety, my physical health is a much bigger issue.  I have a migraine that has been going on for over a month and while it has improved with treatment, it never goes away completely and the pain always goes back to excruciating after 3 or 4 hours.  My neurologist has tried different infusion therapies with the same results.  When I go in for these treatments they can't get an IV and I'm covered in bruises.  I am taking a medication to prevent migraines but this one is not going away.  On a related note, I convinced my neurologist to do an MRI with contrast and it showed a small spot on the back left of my brain.  I’m not sure if it’s related, but I have static in my vision that never goes away, along with random white flashes.  The recommendation is to just repeat the MRI in six months, though with everything that is going on (and since the original MRI was before the migraine started) I am not sure what the course of treatment will be.

I have what they are calling a calcification growing above my teeth, left of my nose.  It has become very painful and seems to be pushing the teeth below it down, which is, in turn, putting pressure on the teeth on my lower jaw.  The pain extends into my sinus and up into my eye.  I have an appointment with an oral surgeon in a couple of weeks to figure out what is going on.

The rheumatologist called with the results to my tests.  There was one that came back positive, the p-anca, which she insists can be a false positive.  She said that the only real (but unlikely) possibility is vasculitis.  She said that it can cause problems head to toe and to get any problems checked out.  She is having me keep her updated via the online record system.  The information I read says that the only way to confirm vasculitis is through biopsies.

I had a colonoscopy and endoscopy done and, while they said they did not see anything, they took several biopsies.  I feel that I did, however, choose the wrong GI specialists to go to since I specifically remember screaming in pain multiple times during my colonoscopy.  I was not supposed to remember any of it.  And the nurse who called me with my biopsy results didn’t want to listen to anything I said or discuss possibilities.  They first said the biopsies looked like celiac disease but the follow-up blood tests showed that it is not.  I was told by my doctor that at the follow-up with GI they can do tests to show if it’s an intolerance issue.  The reading I did about celiac and intolerance said that the way they can tell on the biopsies is because of damage to the intestines.  My follow-up appointment is in a few weeks.

My last trip to the regular doctor was for ear pain and ringing and they said there was fluid but no infection in my ear.  They suggested it was most likely a sinus infection, yet the MRI I had the day before showed no inflammation or clouding in my sinuses.  I have finished my antibiotics and I am still sick.  A couple of days ago I when I was coughing up all kinds of stuff I was feeling the lymph nodes on my neck.  They are swollen, but on the bottom of the one on the left...well, it’s not just tender, it’s hard....like a hard lump.  I am going to to call my doctor Tuesday morning to see if they can get me in.

And to wrap up this list of kill-me-now crap, when I went grocery shopping on Friday I was having joint pain (as usual) and the migraine was complete with extreme nausea and sound, light, and smell sensitivity.  I know we all know the old “Don't go to the store hungry”, but have you ever tried going to go grocery shopping when the sight of food makes you gag and you can’t even think about eating?  I wore ear plugs to block out the screaming children (and adults actually) but about halfway through my joint and mouth pain, coupled with the nausea was too much.  I was in the middle of a huge store with nowhere to sit down and the left side of my upper body ached.  I was reduced to taking a ton of deep breaths to hold back my tears and leaning on the side of my cart to limp to the checkout.  I don’t think I will go grocery shopping by myself again, unless I am in much better health and I don’t need much.

I will wait until my next entry to write about how I’m settling into my very solitary life.  I will leave you with an apology for complaining.

Fibromyalgia?

I thought I would write an update about what happened with my appointment with rheumatology and write out some emotions.

My appointment with rheumatology was...depressing.  The doctor said that from the physical exam it looks to be fibromyalgia.  She said that some of the medications I took close to the appointment could have affected the exam so I am welcome to come back in three months for another exam.  She ran plenty of bloodwork and did xrays.  She is supposed to call in two weeks with the results.  The reason it was depressing is that if it is fibromyalgia (which she felt very strongly that it is):

1)  There is no way to prove it.  When you have a psych diagnosis and drug use history it is hard enough to get people to believe you, damn near impossible when you're talking about pain.

2)  Medication is unlikely to help and I have tried most of the options.

3)  She insisted that I would have to find ways to feel better through eating healthy (which is expensive and eating what I want is one of the few pleasures I have left), exercising (which causes more pain), and meditation.

4)  While there may be some days that are better than others, I will never be well and the pain will never really go away.

I have been fighting with doctors and nurses trying to make absolutely sure that there is no way it could be something else; something that I can prove and something that there are real treatment options for.  I don't want to have to defend myself against accusations of trying to score meds, making up the pain, or trying to get attention.  I guess it is very similar to mental illness in that no one can see it and you can't prove you're sick.  You just feel it.  And the options for treatment are often ineffective with severe side effects.

With the debilitating pain and fatigue, I am also struggling with memory and keeping my thoughts straight.  I can't keep the days straight, forget what I'm doing seconds after I decide to do it (several times a day), and I have trouble figuring out how much time has passed.  Even now I'm having trouble focusing my thoughts enough to write.  Insomnia, while a problem in itself, exacerbates all the others.  Add in GI issues (which are too TMI to explain) and trouble regulating my temperature, it's like the perfect storm.

Other than my already scheduled colonoscopy/endoscopy, I have decided that unless there is something definitive on the test results I am just going to accept that there is nothing anyone can do.  I will take my medication and stop trying to convince people to help me.  I just have to accept that this is the way things are.  And as much as I would appreciate people helping me, it has become very clear that even if I can convince them to, it comes with very extensive strings.  I do not have the energy to continue to give what I don't have to people who are only around when they need something.  I have nothing to give.  I have to put myself first.  That's all I can do.

Undiagnosed Illness

It's been awhile since my last update.  I feel bad that I don't have anything fun or exciting to write about.  I spend all my time in my room, in bed.  I rarely leave the house except to go to doctor's appointments or for food.

My physical health is not good.  While my pain used to be widespread and non-specific, it is now localized to my joints with some very recent sharp pains in my left side.  My test results have shown high platelets and inflammation.  Nothing else is really off, at least not consistently.  I have a lot of trouble regulating my temperature and usually have a low-grade fever.  I bruise easily.  When my dentist did a pan xray it showed deterioration of my jaw, probably due to some kind of arthritis.  I have been having GI issues and the GI specialist scheduled me for an endoscopy and colonoscopy next month.  I am seeing a rheumatologist on Thursday.

I have to go almost two hours for my rheumatology appointment because the one where I live turned me down for an appointment.  I am hoping if they give me a diagnosis I can be treated somewhere closer to home.  My family has suggested going to Mayo Clinic in Minnesota if nothing comes from the rheumatologist.  That, however, takes prior authorization from my insurance and the trip, stay, and expenses are more than I can afford.  But if I don't get answers or a decent referral to another specialist I will have to try.

I am depressed, but not overly.  I am frustrated and sleep deprived.  I am not very pleasant to be around since I have nothing to talk about other than my health issues.  I tried Cymbalta because it is said to help with fibromyalgia, but it made me manic.  I would try another but the thought of dealing with side effects and how they could affect my diagnosis makes me choose to wait.

I hope I have more interesting things to write about next time.

Going on three months...

After over fifteen years of being on multiple psychiatric medications and switching between med after med with short-lived results, I got my psychiatrist's ok to try stopping my lithium, brintellix, seroquel, and trazodone.  My depression was the worst it has ever been.  I have never been so unbelievably angry.  I have never wanted my life to be over so badly.  If I could have gotten over the idea of people in my life never forgiving me for ending my suffering I would not be typing this right now.  I can't say I'm happy, or even content, but every other thought I have isn't about how I can get out of this life as fast as possible with the least amount of damage to everyone around me.  It's baby steps, but I'm back to treading water instead of drowning.

Unfortunately my physical health has been pretty bad.  I got sick towards the end January and when I went to the doctor they said it was viral and to just take it easy.  I went out of town to return my car to the bank (a story for another time) in the middle of February and I had just been getting increasingly sick so I stayed with Monty and went to the doctor there.  They gave me antibiotics, saying that a viral infection shouldn't have lasted that long.  I was having chest pain with upper back pain that radiated into my shoulder and up to my jaw, and nausea along with the normal symptoms of upper respiratory and sinus infection.  The doctor warned that the pain and nausea could be signs of something cardiac but I said I was fine with just the antibiotics, no need for other tests.  I just figured the first doctor should have given me antibiotics and I would be fine.  She said that if the symptoms got worse or got bad all the sudden and especially if they came with shortness of breath to come right back in or go to the ER.

The day after I finished the Z-pak antibiotics I was still sick and when I got out of the bathtub I suddenly felt really nauseous, the pain on my left side was intense, and I could barely breath.  After I sat with my head between knees for about 20 minutes, I went to the ER.  I've always been a hard stick, but apparently I was extremely dehydrated.  They were unable to get an IV and tried for over an hour to get blood.  They even tried arterial draws and eventually ended up getting blood from my groin using an ultrasound.  Long story short they said it was pericarditis (the inflammation of the membrane around the heart).  Even longer story short I went back to the doctor a few times, had a few more blood draws, and a urine test.  I was given two more rounds of antibiotics and even though my blood work and sinuses have cleared up, I'm still not doing well.  I am in a lot of pain.

I'm struggling with the diagnosis of fibromyalgia.  I went to my neurologist and asked him to run any test he could think of to see if it could be anything else.  The medications that are for fibromyalgia aren't working and other than therapy they say there's nothing else they can do.  So far the tests are all normal.  There's still a couple of them to come back, the ones for autoimmune and rheumatoid arthritis.  I just wish someone would tell me how to make the pain stop.