The Patient Struggle

The Patient Struggle

Medical patients of a chronic illness go through a larger battle than what meets the eye. It is more than time spent to see someone, money given, or even the action of explaining what all issues there are. Sometimes it is devastating to learn that the needed care will only go unattended.

Some people complain daily of debilitating symptoms such as pain, illness, or outright abnormality of the body which is left untreated or minimalized. Recently, I have had such a struggle. It began years ago when I had surgery for a kidney stone that was too big to pass through the urethra. I woke up with a stent reaching into my kidney to help aid passage of remnant stones safely out of my body. The doctor who removed it said, "Oh my! I am so sorry. This stent was defective. There was a hole in it during production, and you will experience an increase in UTIs for the rest of your life." I thought that was alarming. I will now tell you what is worse.

The Patient Struggle

I have had three surgeries for kidney stones in total. Those were just the ones that were too big ever to pass on their own. I would imagine that my kidneys have scar tissue and possibly other lifelong effects of the trauma. A few months ago I had all the symptoms of another UTI. I am waiting for my healthcare to start and go back to the doctor and get more medicine. I was given conditional approval April 11th for May 1st, but they can't find my name on their computer to pay my first premium, and I'm told to wait up to two weeks for that internal investigation. I did say more medicine. The doctor already gave me 3 (three) pills after an appointment that I paid out of pocket for (in addition to the collected bills from that office already). Those three pills took away the pain, but I am left with the fatigue and smell when going to the bathroom. I do hope it is no more than two weeks. Holding onto a UTI for this long cannot be healthy.

I send a shout out to all of the patients struggling to gain healthcare and treatment which are two very different things. I salute your perseverance throughout the fight and hope you know that you are not alone.

Please like and subscribe!

Edits Done Write

The time has come to start working out my future. I have been driving for ride-share companies such as Lyft and Uber. This work has brought in side income. Now is the time to focus on my career. I am a writer and editor. Having this condition has taken time away from creating and maintaining a proper portfolio. I have started an eBook but have only completed the first couple of chapters. My health has improved since the surgery. I have the usual pains, but the lung is no longer collapsing. Since the lung failure I wrote an article for The Mighty and to my surprise it was selected for publication.

https://themighty.com/2016/12/joint-hypermobility-syndrome-and-walking-in-snow/

 There were few or no editorial changes made to my article from what I could find. It did have a title change. I was pleased with this result.

I decided it was time to put my hard work towards an education to work for me. I opened a business for proofreading, editing, and peer review. I work on essays, résumés, book reports, emails, transcription, and more. I do hope this new job keeps me busy. My mind is always racing but by body can't keep up. I could be a writer, but my interest is in editing. It is a language by itself. My new website is available to view:

https://editsdonewrite.yolasite.com

I plan to be extremely careful with all future blog posts since potential clients could now view my work. I am excited to begin.

Surgery VATS with pleurodesis

Facebook

I have not been posting because I have been pushing my limits while having Ehlers Danlos Syndrome. I got steroid shots injected into my lower lumbar region and, unlike most people, it actually worked for me. I then pursued a full time job. For the past year I have been working to build surgical parts. It has been fullfilling work to know that I have been able to assist doctors in improving the quality of life for people around the world. I am now unemployed. Reoccurances of primary spontaneous pneumothorax took that from me and family. I saw my 3 year old dislocate and relocate his thumb yesterday. That was the first time I have ever seen anyone besides myself go through it in person. In this post, I'd like to add a call to action. This page is old and never really received much love to begin with. Please click contact us on the page linked above to visit the website and see if anyone's gofumdme is still working to help them. That is my goal this weekend in addition to school work and healing from VATS with pleurodesis.

Spontaneous Pneumothorax

I send my most sincere apologies to my followers that I have taken so long to blog update. It has been a long road. I started working while so far behind on bills. This was after steroids in lower lumbar region. I began working October of 2015 and have been pushing hard. When I feel like giving up I go into denial of my EDS and promise myself it would hurt this bad at home too. In mid-April, I had another primary spontaneous pneumothorax. This is a highly rare thing to happen to people. It happened to me for the second time in three years. I was put on medical leave until mid-May when I could get my pulmonologist to release me. I withdraw posting about my feelings thinking my children may read this one day. My love goes out to all fighting today!!

Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...

Redirect to EDSFC for latest news and insights:

Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...: Did you guys see American Ninja Warrior? Michael Stranger's wife said she has Ehlers Danlos Syndrome and that for her it is a terminal i...

Redirect to find out what is being talked about in the Ehlers Danlos Support Groups this June of 2015 and learn what you can do do about it! Click the link above.

Quick Update on Fundraiser

It was brought to my attention that  people who want to donate are uncomfortable using gofundme and prefer paypal transactions instead. After learning this I have added a paypal button to my blog here. I am still in need of funding for my upright mri in Carmel as well as to keep up on fuel for the numerous appointments I try to keep during this journey. I have the desire to take my family to Heidi Collins in South Bend, Indiana and such funding may just make that possible. If you are unable to donate that's ok! Just having your support means the world to me.

Pain Meds and Me

Pain Medication and Me

I can't decide if I like or hate the pain medication. It seems like we have a love hate relationship going on. I love that I can clean my house and do way more than normal on an average day. There is a lot to catch up on over the many days I was unable. That feeling is overwhelming but knowing I have medication for the days coming gives me hope that I can get caught up and in a decent time frame.

On the other hand, my head feels fuzzy. I feel like I have more irritability and less patience as if that wasn't a problem to begin with! It was. I don't like the idea that I have to pop a pill just to measure up to the ability of the average person. I don't like feeling like my head is fuzzy. I don't like how my body continues to drag as if I am exhausted from the pain I usually feel but am not feeling so much now.

If you are wondering if I am addicted then know that I am not. I have only been on pain meds for 10 days now. I was on them for about 10 years and it was just like this before too. I was on them with xanax too though which not only helped me with my regular anxiety problems but also reduced the increased irritability and loss of patience I am dealing with now. If you are wondering if I am dependent then know that I am. I depend on them to have the abilities of an average person. The pain I deal with everyday is lessoned to the point that I can push through and look like everyone else trying to do so. I will still have my sudden pulled muscle, subluxation, or sprain but not the chronic daily pain keeping me from enjoying life and getting stuff done.

For so many examples we can not just have our cake and eat to too. I am open to any suggestions on this. For now I will remain thankful that I have any treatment and hopeful that I can set new goals and reach them such as gaining new employment with higher pay and more hours.

It is now taking me more time to write my blogs as my semester ended and my college took back the Dragon Naturally Speaking software so I no longer have talk to text. They even do a remote uninstall to make sure it is returned, It will cost me $99 to buy my own personal copy of the software.

As always please subscribe and share!