#chronically parfect

[mylifeisachronicmess]

Well, I had my L5 S1 fusion hardware removed on Thursday. I spent that night in the hospital and I was able to come home on Friday afternoon. It has been painful, but it's going to be much easier than either or of my previous surgeries. I am grateful I had it done. I am hurting quite a bit right now, but I think that's because I just took a shower for the first time and I made between doses. My surgeon said everything went well, there was one screw that was kind of tricky to remove, but after some prying and pulling he got it out. He wasn't originally planning on using a catheter this surgery, but after my mom brought up that I can't pee right before I went to the OR he decided we should probably do a Foley. So I had one and it didn't come out until Friday morning. Surprisingly, I was able to pee my first attempt! I have no idea why it was possible this time. My only guess is that they put the catheter in as soon as possible once I was out, and my surgery was only 2 hours, not 5-6, so less time under anesthesia. I was grateful. I was thrilled not to have to have more catheters or take a Foley home this time. I am sure my bladder struggles after surgery are not over, but this time it was nice! I don't see my surgeon for two weeks. This is a little bit confusing because my discharge paperwork says he wants to see me within a week. So I guess I will be calling the office tomorrow to find out for sure. I am thinking maybe it's because I will run out of meds before this week is over and he will want to see me before prescribing more, and probably look at my incision. Anyway, in the midst of everything this week I realized that Lupus is an official diagnosis in my problems list in my chart. It is kind of nice to have a name to go with everything I have been going through. I'm not thrilled with the diagnosis, but I'm content with it. I'm grateful to finally have a real diagnosis. This week has kind of been a whirlwind, and I'm grateful for everything that has happened this week. I'm happy I won't be getting pinched by my screws anymore. I'm happy I won't be getting stuck nearly as often. I'm happy to have a diagnosis. And I'm exhausted! I think it's time for some pain meds and to call it a night. Thanks for reading!

[mylifeisachronicmess]

You might be a Spoonie if you use a medicine cup to scoop up and eat the muddy buddy crumbs at the bottom of the bowl.

[mylifeisachronicmess]

Blood work came back. My dermatologist himself called me and informed me that the result came back high and abnormal. He immediately told me that he is still really concerned and thinking this is lupus. Because the lab came back abnormal he is sending me to the rheumatologist asap. He wants him to do a more extensive work up and get me a diagnosis and treatment plan. I am so grateful that my labs are finally agreeing with my body and how I have felt for so long now. I have an appointment with the rheumatologist on April 16th. I am currently waiting on paperwork to come in the mail so I can fill it out and be ready for this consult. I don't want to have a chronic illness by any means, but I am so ready for answers and a real diagnosis. Whatever disease I have, it won't define me. It will simply be a part of me. The more research I do on lupus, the more sooo many things and past, seemingly not connected, problems are explained.

[mylifeisachronicmess]

Should I Cancel My Appointment!?

Ugh, just another day in my life. But it could be so much worse, so I will take me issues and keep going! I see my endocrinologist next week and I am not auper sure what he will say. My mom wants me to cancel the appointment because the birth control seems to be helping a little bit. But the endocrinologist cares more about the pituitary enlargement and I want to know what his thoughts are on that, I still have headaches, still fatigued, but it all might be better explained by the rheumatologist. So, maybe should I cancel the Endo until I see the dermatologist and hopefully the rheumatologist ( so many specialties - I am only 23!!) and if they can't give me answers I can go back to the Endo. I don't know what to do! What would you do??

[mylifeisachronicmess]

I have my dermatologist appointment in a few hours. I am really nervous. Not because I really have much to talk to him about, but because I really need him to refer me to the rheumatologist. I need to make sure I get everything said that I need to. I am nervous that he will just blow me off and say that my hand rash is nothing. But the fact that my fingers swell up like balloons when the rash comes and that I feel feverish and just overall kind of gross. That along with everything else makes me think I really need the rheumatology referral. I am hopeful that if the dermatologist won't refer me that my primary care will after reading the dermatologists note. I just freaking want the referral! I want to know why my fingers and toes hurt so bad. I want to know why I feel somewhat gross most of the time. I just want to know.

[mylifeisachronicmess]

Could It Be RA??

I'm beginning to wonder if I may be developing Rheumatoid Arthritis. I have had unknown and un-diagnosed issues for quite a while and I truly wonder if it could all be explained by this condition. It would answer so many questions. It would explain why my hands and fingers get weird rashes, hot to the touch, swollen, tight and painful. It could explain my consistent low grade fevers and overall lack of feeling healthy. It could explain the excruciating knee and hip pain I get a lot. It would explain why my back just isn't getting better, despite 2 (almost 3) surgeries. It really could answer so many questions, but I don't know how to get my Dr to take me seriously. I see my new one this week and I am hopeful he will listen and understand my concerns. I hope that once I tell him how many family members have autoimmune diseases he will look into it further. All I can do is wait and wonder, but I am really curious about this. My one ANA was negative but my ESR was borderline and those aren't even the blood tests for RA. I am trying to be cautiously optimistic about this. If I do have this, I refuse to give up. All this would do is put a name to my symptoms, it wouldn't change my outlook on life. I refuse to become my cousin who got a diagnosis and instantly gave up.

[mylifeisachronicmess]

New Primary Care Dr advice.

So, I am scheduled to see a new Dr for primary care in February. I have had some problems with my current one due to him not looking deeper than the surface for answers. But, I also have one scheduled with my current primary care as a 6 month follow up. Anyway, my question is, how do I cancel my appt with my current one without having to feel bad. I will still have to work with my current Dr is he works in the ER sometimes, and I think that is what is making me anxious and hesitant. I also am not sure what to tell the new Dr when he asks why I decided to switch. I want to be honest, so he doesn't do the same thing, but I don't want to bag on my other Dr. It feels weird and I don't know that I should be. So do I go to my current Dr's appt and the new one, or just wait until Feb (nothing acute is happening right now, just my normal crap)? I would love advice. Thanks!

[mylifeisachronicmess]

Pissed at my Aunt

Okay, so my nephew is 9 months old and gets taken care of at my house 4 days out of the week while his parents are at work. This is all great and dandy. I used to watch him basically all the time throughout the summer (this was exhausting and so painful - on levels nobody could understand), but I pushed through and I survived. This changed when I went back to school this fall. I agreed to watch him from 12-3 on Monday afternoons. My aunt agreed to watch him from 630-12 on Monday's so I could go to class or so homework. Well, this semester took a big nosedive into the toilet and I ended up dropping my Monday class, so I am here in the morning. Unfortunately my Aunt has decided that since I am not in school she needs to be all over my case to figure out what I am doing and why I am not doing homework or I'm not in class. This is incredibly frustrating to me because she has agreed to watch him during this time period, and it shouldn't matter what I choose to do with the time I have before I take over at noon. The other incredibly infuriating part is that she has always been so curious and tells me to rest and get feeling better, until it's an inconvenience to her. I don't understand her thought process, but I am so pissed that I get given guilt trips, passive aggressive comments, and dirty looks every week when I sleep in on Monday's. Nobody understands that sleeping is just as important for me as going to school. I am so sick of her!

[mylifeisachronicmess]

Iron Supplements and IBS-C...

Okay guys, this post might be a little TMI, but I am getting desperate. So, I have IBS-C and have had it diagnosed for the last 2-3 years, but I have battled constipation my entire life. I was put on Linzess and the occasional miralax to help with this at the time of diagnosis and things have been going well. I have been prone to anemia lately and I was recently put on a daily iron supplement. I have been on some Tramadol for my back flare up the past couple weeks as well. I am sure it is a combination of things but I am incredibly constipated. Earlier today I was almost nauseous and queasy after I ate or drank anything and I think it is all related. I did take some dulcolax last night and it helped mildly. I take Colace twice a day and the linzess. Being nauseous is miserable, and horrifying (I have the irrational fear of vomiting-but that is a whole different story). I don’t know how to go about asking my Dr. for Zofran for times like this. I don’t even know how to approach it at my appointment in January. My mom had a Zofran from previous issues and gave one to me, it helped significantly, but I am still constipated. I was able to have a small movement, but not enough to make much difference. I still feel bloated, gassy, and miserable, and I am running out of ideas. I think this is all due to the iron supplements over the last month. I feel like I need a good colonoscopy prep clean out (without the scope), but having to drink anything makes me feel sick again, and I don’t have the option for more Zofran. I would love ideas! I feel like crap (no pun intended) and have to cook all day tomorrow for Thanksgiving, before going to work all night. I really need to feel a little better but I don’t know how to get there. If anyone has any experience with this issues I would love to talk to you! I would also love ideas on how to approach the need for an on hand antiemetic with my dr - that whole conversation makes me anxious. Thanks for reading!

Wishing everyone in the States a Happy Thanksgiving! 

[mylifeisachronicmess]

2018 is just around the corner! This year has been full of emotions, challanges, heartache and change. Looking back on it, I have grown, I am at a place in my life I didn't know I needed to be. Being told that I probably won't be able to have children has been really hard, I was convinced I didn't want any - until the option was taken away. I had to start a new job and I moved home to stay. Change isn't always easy for me, but it has been necessary. I am grateful for where I am and what I have learned, but I am hopeful for 2018. There is a very large chance that I will be having back surgery #3 within this year, but I am okay with this. I have learned to go with the flow regarding my back and I am trying very hard to accept what I can not change. I refuse to surrender.

[mylifeisachronicmess]

Okay, I know there are a lot of pictures of my hand, but I am perplexed and hoping to maybe get some advice/guidance. So for the last few months I have noticed that every night sometime between 9-11 my hands break out in this odd rash. It's the worst at work, but happens no matter where I am. Most of the time it's like the first 3 pictures and is just around my joints and fingers, but occasionally it's my whole hand. The joints and whole area gets really hot to the touch. My fingers and hands are mildly achy and moderately tight all the time, but it gets worse during this rash. The rash usually fades within an hour or two and then I'm fine again. I generally feel night fevered at the same time. Is bizarre and I have no idea what could be going on. I have also noticed that I am having more dizzy sensations the last few weeks as well. I see my dermatologist tomorrow for follow up about the intense cold sores I keep getting. I will show him the pictures, but I am not sure he will be much help. Has anyone had anything like this before or have any thoughts on what this might be? Thanks!!

[mylifeisachronicmess]

Birth Control... Not sure It's Worth It.

Okay, I am truly beginning to wonder if being on the birth control is even a good idea. I have tried not to think about this side effect that is actually pretty freaking scary, but I am worried I maybe have a pulmonary embolism (blood clot in the lung). This is a possible side effect of the sudden estrogen increase and where my body is used to having none I am scared this might be what's going on. For the last 5-7 days I have noticed a muscular like upper back/side pain that is now radiating around to the front of my chest. I have already noticed a sharp pain in the same area when I try to take a deep breath and it is getting worse not better. I tried to brush it off at first thinking I slept weird or something but now I am having more centralized chest pain and shortness of breath in addition. I am scared. I will call my Dr again tomorrow (I am sure the MA is so sick of me) and see what he thinks. I am afraid he will just send me to the ER, which I absolutely do not want to do. I work in the ER and I really don't want my coworkers having to take care of me. If I have to I will go, I just would really like to avoid it if I can. But this pain isn't going away, it's actually getting worse and I have this bad feeling about it. Man, can't I catch a break? Just a quick one would work! And the worst part is that if this is a blood clot we would have to stop the birth control, which would drop my estrogen levels again and there isn't really any way to fix that. I am not sure what they would do...

[mylifeisachronicmess]

Well, last night definitely did not go as planned. I ended up in the ER for, I think the second time in my life (well, as far as I can remember). I started the birth control 2 weeks ago and I developed the chest/back pain and shortness of breath over the last 5-6 days. I initially thought that this was just a funny day with my back and I thought I slept on it weird and it would go away. After the 4th day and the developing shortness of breath and increasing pain with breathing I finally decided to tell my mom. She immediately grew concerned and told me that I should probably get it checked out. Unfortunately, birth control can cause blood clots in some people and lead to death if left untreated. I was reluctant to call my dr. because I was pretty darn sure it was nothing, and I knew that when I told him my symptoms he would want to send me to the ER. However, after really struggling to breath after going up a flight of stairs I decided I should probably be seen. I was going to work but called my dr’s. office before. He was in the OR but called me back shortly. I told him what was going on. He didn’t necessarily think I really had a blood clot in my lung, however, he also knew that it was possible and I was presenting with concerning symptoms - he told me to go get checked out at an urgent care. When I informed him I was at work (in the ER) and I would be off in 2 hours, he decided that would work. I would simply clock out and then check in as a pt. However, I was mortified. I didn’t want to be a pt in the department I work in. I was very reluctant to do this. Thankfully my work family loves me and wants to take care of me. I mentioned to one of my favorite nurses and techs what was going on and they pulled me into a room to check out my vitals and see a quick peek before really checking me in. My blood pressure and heart rate were sky high and I had a low grade fever. The nurse went and grabbed the dr who was in the department at the time and he came in to assess me as well. After a quick chat and a look at my vitals and a listen to my lungs he agreed that I needed to be worked up. So I was then taken to a room and checked in as a pt. As embarrassed as I was, I am glad I did it. I didn’t want to and I really didn’t think anything was going to come back positive. However, peace of mind is a great thing, and I am not exactly the healthiest person around, not the sickest, but not the healthiest. We did extensive blood work, a chest xray, an EKG, and some hydration and pain meds. It was nice to be taken care of so well, but it sure did feel weird to be on the patient side of my job. All is well, I probably have pleurisy and some lung lining/chest wall pain and inflammation. I was reassured that it was best that I did get checked out and I then got to go home. It wasn’t my favorite night, but I am grateful for my work family. I am grateful for the dr who took my seriously and wanted to make sure I was okay. He was really cool about it and did a great job to not make me feel bad or embarrassed about it. He was even really nice today when I came back to work, he happened to be the doc again and he was really great. He quietly asked how I was doing before he left, but he didn’t make it incredibly well known that I had been a pt while also checking up on me. I am glad nothing crazy is going on and that I am okay. I am grateful for my primary care dr, and my OBGYN who also takes time to call me himself rather than pawning that off on his MA. I am grateful for my work family who shows how much they really love and care about me, despite not being anything more than a clerk. I don’t really have any desire to need to go through that again, but I am grateful they have my back if and when it is necessary. I am one lucky girl. 

However, I am still not feeling that great and I am exhausted after my 8 hour shift. The last hour was brutal today. I had some serious anxiety and frustration on top of not feeling well and having a hard time breathing. Good night! 

[mylifeisachronicmess]

I just want to say how much I love my back Dr. He is so kind, he really cares about me, and he genuinely wants to help me be pain free (well, as close to that as possible). I saw him today, a month before my one year post op, due to sudden increased pain and uncontrollable muscle spasms. He was so helpful. We did a set of X-ray's and then he went over the images and helped me understand what is going on. I am still fusing, slowly, which is great. We talked about the weird sharp pinchinf sensation in my left low back at times. He thinks that may be from the hardware, not that it is loose, but some people are just sensitive to the metal within them and can feel it at times. If I am still having this sensation in 3 months then he wants to dig a little deeper and try a trigger point injection of the screw in that area to see if the hardware needs to come out sometimes in the near future, as long as I am completely fused. He thinks the muscle spasms are due to simply having a bad back. They will probably flare up from time to time and it is something I will have to figure out and work with. He prescribed me some more pain meds and he is having me try a muscle relaxer at bed when the spasms are the worst and we will follow up in 3 months. I am so grateful for him and for everything he has done for me, he has gone above and beyond to help me. He is phenomenal and I couldn't ask for a better surgeon. I am truly blessed.

[mylifeisachronicmess]

So I have been on birth control for just under 3 months and I have definitely gained some significant weight. This is depressing for me. I was finally accepting my body and feeling good about it. Now I am maybe feeling a little better overall, but much more depressed about my body image. I swear I want to eat everything I see and I am retaining so much water. I don't know what to do. At what point is this normal is concerning. I am not obese by any means, but I am uncomfortable in my own skin. I would be happy to try getting a workout routine in, but my back is so angry about life that I don't want to risk it. I am so frustrated. I need to be on this med for medical reasons, but I hate the side effects. In addition to the weight issues I have been spotting non stop since I started this, I get dizzy and lightheaded sometimes, and I have so much acne!! I have never had this many pimples in my whole life, let alone all at the same time. So frustrating! Has anyone else been through something similar, I would love advice. Thanks!!

[mylifeisachronicmess]

Extra bad back pain tonight and I am frustrated. I think this is getting worse because I have gone back to school and started carrying around my backpack again. I don't think I have messed up anything, I think this is mostly muscular, but I am a little afraid this will just be my life. I don't want to call my Dr because I have made such progress over the last year and now I feel like I am just going to be a burden, but I really don't know if I can't make it to November when I see him next. I am so over this back pain issue. I just want to be able to be a normal college student who doesn't have to think about her health and what carrying a simple backpack may be doing to her messes up spine. I just want to go back to who I was 4 years ago. Ugh.... I can't believe it's been that long.